Devastated, Madison thought about the possibility of carrying their son as long as she could, so they could donate his organs. They learned to qualify for organ donation, he had to be carried to 36 weeks’ gestation, and weigh at least 6 pounds- this became their goal.

After delivery, their son, who they named Cameron, was placed on Madison’s chest and she said it was “the most magical, best feeling in the whole world.” Doctors confirmed there was nothing they could do to intervene. Madison and Ty said they were confident Cameron didn’t feel any pain, and it was the best decision for them.

Ty said that when he got to hold Cameron that “it was perfect, the world was perfect, everything was right.” Cameron lived for two hours and 43 minutes and Ty says, “for two hours and 43 minutes the world was perfect.”

When asked how that experience changed their lives, Madison said “it puts everything into perspective, our lives are so short. I want to be so positive; I want everybody that knows me to feel my love for my son.” Ty said that it had helped him to appreciate time and people more. He said, “I felt a new kind of love that I didn’t know existed, and that was special, it was so special.” Ty said advice he would give is that “your wife probably knows best. She has the closest connection, and she knows things that you don’t know or can’t experience, and you should trust her. I chose that whatever my wife would like to do, is what we are doing do. And that was the greatest decision that I’ve ever made. He said you get to experience good things out of it. Do your research, listen to your doctors they have a valued opinion, they are looking out for you as their patient, but this is your life.” Madison says the best advice she can give is to just acknowledge that it’s the worst thing in the world. For somebody in that situation, I would say I’m always here. I know it’s terrible but I’m always here.

Ty and Madison love to talk about Cameron. They want to take every opportunity to talk about him. Ty says “everyone apologizes and says, “oh I’m so sorry I didn’t know you lost your son.” Which he replies “don’t apologize, let me tell you about him.”

The post Madison and Ty: Expecting a Terminal Baby appeared first on Orangesocks.org.

After receiving a prenatal diagnosis of a life-limiting condition, you will be navigating information, decisions, grief, and the inevitable experience of telling your family and friends about the diagnosis and prognosis. The idea of sharing this news and devastating reality with your network of family and friends may seem daunting, and you may not feel fully emotionally prepared for the process.

Special thanks to Carrying To Term for their partnership in providing this resource.

First and foremost, you are in control of this part of the carrying to term process. How and when you tell your family and friends about the diagnosis and prognosis for your baby is entirely up to you and your significant other. There truly is no right or wrong time to share this news with your network of relationships. There are no specific or right words to convey this news, explain the future, and ask for support.

I wish I could provide you with a script to make this part of the process easier or more clear cut for you. No such script exists; however, I can provide you with guidance to help you navigate this experience well following the diagnosis and throughout each step of the process.

Before you tell your friends and family, you and your significant other should sit down and assess your needs, consider your preferences, and establish boundaries. Once you two have established your needs, preferences, and boundaries, your next step is to inform your family and friends. After you inform your network of support, consider equipping them with the resources necessary to care for your family well. Finally, you and your significant other should work together to craft a plan for on-going communication and set expectations for that communication and support moving forward.

“First and foremost, you are in control of this part of the carrying to term process. How and when you tell your family and friends about the diagnosis and prognosis for your baby is entirely up to you and your significant other.”

ASSESS YOUR NEEDS AND CONSIDER YOUR PREFERENCES

You are your own best advocate. Before you and your significant other begin to inform your network of family and friends about the diagnosis and prognosis, I encourage you to take some time to process the news on your own. You will have received so much information, and you will be navigating a range of emotions and grief following the diagnosis. By providing yourselves space before inviting others into this experience, you allow the two of you to research, process, and begin to talk about the best next steps for your family. Once you have had some time to think, it is important that you then assess and openly communicate your needs and preferences regarding informing- and communicating with- your family and friends.

Here are some questions to consider and discuss before you share the news with your network of support:

• When do you want to tell people?
• How much information do you want to provide?
• Is there anything you are not ready or do not want to tell your family and friends?
• What kind of support do you need and/or want from your network of support?
• Is there any type of support that you do not want?
• Do you want to inform people via direct or indirect contact?
  • Direct contact looks like telling someone in-person or through one-on-one contact like a phone call to an individual.
    • Pros:It is more personal in nature, and it allows for clearer and more specific communication.
    • Cons: It is more personal in nature and can allow for emotional responses that could potentially be triggering to you. This can inadvertently put you in the position of supporting or caring for your network of support or answering questions you are not ready to address.
  • Indirect contact looks like text messages, email, social media, or the use of a designated person to share the news. It is any contact that puts a bit of distance between you and the person you are informing.
    • Pros: It provides space for your family members and friends to process on their own before responding. This shelters you from their immediate reactions and potentially unfiltered responses.
    • Cons: It is less personal in nature, and it can feel isolating to you and the person receiving the news. It may also inadvertently create distance between you and them, and it may create anxiety about offering or receiving support.
  • How do you envision telling your family and friends? What feels the safest, easiest, and most supportive way to inform your family and friends?
    • Here are some options:
      • Hold a family meeting to tell those closest to you about the diagnosis in person at one time.
      • Invite your parents, a few of your closest family members, or the people who will be walking with you through this to meet with you and your social worker, care coordinator, or doctor to help you explain the news.
      • Divide and conquer. You tell your family, and let your significant other tell their family.
      • Appoint a trusted family member or friend to spread the news for you.
      • Utilize a social media platform to share the news.
      • Send out a mass email or text (with the full permission to then turn your phone off or on silent for a while) to your network.

There is no right way to navigate this experience. The only right path is the one that feels the healthiest, safest, easiest, and most supportive to you and your significant other. Your emotional and mental health are the priority as you enter into this process. While the support of your network of relationships is important and helpful for you throughout pregnancy continuation, you do not owe anyone any information, and you are not responsible for their responses or their feelings. As you plan for telling your network of support, start by prioritizing your needs and preferences and that of your significant other. Then, work together to establish the appropriate boundaries for support and communication moving forward.

ESTABLISH BOUNDARIES

A boundary is a line that marks the limits of an area. It is a dividing line. When applied to relationships, boundaries become a personal limit to the relationship and the sphere of activity in which the relationship operates. In other words, personal and relational boundaries are the limits a person puts in place to ensure that they are treated well, and these boundaries also serve as guidelines to help the person navigate their response when someone pushes against those limits. Personal boundaries are interpersonal, as they limit both the incoming and outgoing interactions between two people.

Boundaries can be physical, mental, emotional, social, and/or spiritual, and their purpose is to prioritize your needs, protect your well-being, and provide space for self-care. Boundaries do not have to be rigid, fixed, or unchanging. Healthy boundaries can be flexible- dependent on the situation and relationship- and subject to change throughout pregnancy continuation. Boundaries can be rigid and unchanging, as needed, depending on the relationship dynamic.

The steps for establishing healthy boundaries are:

1. Consider the relationship in question and what you need from it.
2. Consider the boundaries already in place for that relationship and think through any necessary boundary adjustments.
3. Create healthy boundaries for each step of the carrying to term process.
4. Communicate these boundaries clearly, calmly, and sensitively with your network of support.

Following diagnosis and then throughout pregnancy continuation and the bereavement periods, healthy boundaries can look like:

• Discernment about the information given
• Time limits on visits and phone calls
• Guidelines and expectations around questions and communication
• Utilizing a point person or another means of indirect contact to keep your network informed
• Asking for specific help
• Not being responsible for supporting the emotions of your family and friends
• Loosely committing to social events, with the freedom to cancel if needed
• Saying no to social events, requests, or anything else that does not feel like self-care in this season
• Turning your phone off or putting it on silent for periods of time throughout the day
• Limitations placed on social media

You have limited resources right now- physically, mentally, emotionally, socially, and spiritually- so you have the right to say no or express your needs and preferences without explanation or apology. You have the right to take care of yourself, and boundaries help you do just that.

Establishing and enforcing healthy boundaries allows you to put your needs and that of your significant other and your child or children first. These boundaries provide you with the space and energy to make the decisions that are the best for your family. They also help protect the limited time you have with your baby. Boundaries are a form of self-advocacy, and it is both helpful and important that you work to identify and establish the boundaries that you and your family need before sharing the news of the diagnosis and inviting your network of support into this process.

“Establishing and enforcing healthy boundaries allows you to put your needs and that of your significant other and your child or children first. These boundaries provide you with the space and energy to make the decisions that are the best for your family. They also help protect the limited time you have with your baby.”

INFORM YOUR FAMILY AND FRIENDS

After you and your significant other have spent time identifying your needs, considering your preferences, and creating boundaries, you are prepared to tell your family and friends about the diagnosis, whenever you are ready to do so. There is no timeline, and there are no rules when it comes to choosing when, where, and how you let your network of family and friends know about your baby’s diagnosis and prognosis. You may find that, even after all your preparation, you just do not feel ready at this point in the process. This is a normal reaction because it may feel as though keeping the news to yourself means that it is somehow not real- as if it is all just a bad dream- or you may worry about what it means to share the news.

While you are in full control and get to make this decision entirely for you and your significant other, I encourage you to lean into the discomfort, the anxiety, and even the unknown that comes with sharing such hard news with the those in your life. Sharing this news is the beginning of sharing your story. When you put words to what is happening and invite people into this experience as support for you, you are advocating for yourself. You are practicing self-care by allowing others to walk this path with you and help support you emotionally, mentally, physically, socially, and spiritually.

Fundamentally, you need all the support you can get throughout this process. This experience is hard enough as it is, and if you have people that you trust around you that want to enter in, offer support and tangible help, or simply be there to listen to you as you process, lean in. Let them know about the diagnosis, and let them support you. You do not have to navigate this experience alone.

If you are wrestling with the idea of sharing the news, I want to remind you that you are in control. You get to control the narrative. You get to choose what information you share or do not share. You get to set the tone of the experience by sharing your own emotions. You get to paint the picture of what this process is like and will be like each step of the way. This is your experience, and though I know it is not one you would have chosen, and it may feel like you are entirely out of control, you do get to control this experience of telling your network of support. You get to share your story on your terms.

As you navigate sharing the news, let me just encourage you. There are no right or wrong words. There can never be too much or too little information. It is okay to be emotional when you share the news. It is okay to be numb or stoic when you share the news. It is okay to not know the answers to their questions. It is okay to say that you just do not have the emotional bandwidth to answer their questions right now.

When you are ready, I encourage you to start with the people in your life that you trust and feel the safest with and most supported by. These are the compassionate people, the people who know you the best, or the people you regularly go to with your heartbreaks and your joy. These are the people who you know you can count on to be there in the hardest of hard situations. Start with them, share the news, and then share the news with the rest of your network of family and friends.

“As you navigate sharing the news, let me just encourage you. There are no right or wrong words. There can never be too much or too little information. It is okay to be emotional when you share the news. It is okay to be numb or stoic when you share the news. It is okay to not know the answers to their questions. It is okay to say that you just do not have the emotional bandwidth to answer their questions right now.”

While so much of this experience is wholly dependent on the unique and personal relationships you have with the people in your life, there are some practical tips and reminders I can provide to you as you navigate informing your family and friends:

• Use clear, direct statements- with as much information as you choose- about the diagnosis and prognosis.
• Use the diagnosis language, if you feel comfortable, so that your friends and family members can do their own research and find answers to their questions.
• Communicate and enforce your clear personal boundaries.
• Let your network know that you will respond to texts, answer questions, or share information when you are ready.
• Direct your friends and family members to Carrying To Term for resources specifically designed to help them care well for you.
• Remember that you are not responsible for how your family and friends receive and cope with the news.
• You can end the conversation at any point that you need to.
• You do not have to be the one to share the news.

If you are a parent to older children- your baby’s big brother(s) and/or sister(s), you will also be navigating the experience of telling your children about their sibling’s diagnosis. Children’s grief is a unique experience, and it can be difficult for parents to navigate their children’s grief while also processing their own emotions. To help you tell your children about their baby sibling’s diagnosis and walk with them in their grief, please read our post about children’s grief, found here.

EQUIP YOUR FAMILY AND FRIENDS

Equipping your family and friends with tools, education, and on-going support may seem like a daunting task. You already have so much on your plate to navigate, but this is an important and helpful step to ensure that you family and friends are able to support, care well, and navigate this experience with you in ways that feel healthy and safe for you.

Equipping your family and friends can help your network know what to do next. It can help them communicate with you well. It can help them seek support for their own emotional needs. It can help protect you from what may, at times, feel like an overwhelming amount of expectations or demands placed on you for information, insight into your feelings, how you are coping, or tips to help care for you well.

First and foremost, your responsibility is to care well for you, your baby, your significant other, and any children you may have. Carrying To Term prioritizes your self-care, so we have done the heavy-lifting for you when it comes to supporting and equipping your family and friends.

When you are ready to provide resources to your family and friends, we recommend that you direct your network to our website (carryingtoterm.org). There they will find:

• A series of videos to help them understand what it means to receive a prenatal diagnosis and choose pregnancy continuation
• Stories from parents who walked this path to help them understand the experiences you are facing, the grief you feel, and the beauty in your story
• An entire section of our blog dedicated to encouraging, educating, and equipping friends and relatives throughout the process of caring for a carrying to term family

On our blog, we have several posts that we recommend parents share with their network of support after sharing the news of the diagnosis. These resources were written to help your network of support understand the unique challenges, emotions, and experiences you, the parents, are facing. We want your family and friends to feel confident in their abilities to empathize, communicate well, and provide the tangible support you need each step of the way. To equip your network, we recommend sharing the following blogs:

• For Friends and Relatives: Communicating With Parents
• How to Support Parents
• Giving Gifts and Keepsakes to Parents
• Respecting Delivery Day

To help your network of support further understand your experience, we find that the following posts written for parents can shed light on these topics for friends and relatives as well:

• Range of Emotions
• Going Home Without a Baby
• Triggers

If you are navigating this experience while also working, we provide a resource to employers to help them care well for their employees throughout the entirety of the pregnancy and during the postpartum and bereavement periods. You can find our blog for employers here.

“Equipping your family and friends with tools, education, and on-going support may seem like a daunting task. You already have so much on your plate to navigate, but this is an important and helpful step to ensure that you family and friends are able to support, care well, and navigate this experience with you in ways that feel healthy and safe for you.”

PLAN FOR ON-GOING COMMUNICATION AND SET EXPECTATIONS

Once you have informed and equipped your network of family and friends, I encourage you to think through your needs and preferences for on-going communication throughout the pregnancy, during labor and delivery, and in the postpartum and bereavement periods. As the parents navigating this experience, it is entirely up to you how much information you want to share, how often you want to share it, and through which methods you want to share it.

You will likely be on the receiving end of well-meaning questions, advice, and contact at each step of the way. This support can be incredibly helpful and supportive as you make decisions and memories. Sharing this experience with your network of support can be a means of memorializing this experience and making it feel real and impactful. However, sharing this experience can also feel overwhelming to some parents. Deciding how involved you and your significant other want those around you to be is important and at your discretion.

There are a few tools to help you update your community regularly that do not monopolize your time:

• Journal websites like caringbridge.com
  • Sites like this allow you to save time and reduce stress by creating a space for you to share news and updates with your entire network at one time. You can create a private site that prioritizes and protects your privacy and still allows you to ask for help, receive emotional support, and update everyone in a less overwhelming and consuming way.
• Social Media
  • Social media is a helpful way to stay connected to family and friends throughout this experience. Many parents find that posting updates to their social media channels is a way for them to update their community without feeling overwhelmed. Some parents even create pages or private groups to allow for updates in a more focused and private way than just on their main feed.
• Appoint an outreach person
  • Again, appointing a trusted friend or family member (or a few) to update a designated set of people within your network of support is a helpful tool to take the burden of providing information off of parents. When you have updates, you can text, call, or email your point person and then have them share the information you choose with your network of support. This can also be a helpful way for parents to sort through, filter, and answer their network of support’s questions since the questions would come through your outreach person before coming to you.

When you settle on your method of on-going communication, whether it be the indirect suggestions above or through direct and more personal contact, be sure to clearly share your decision and set expectations with your network. Let them know that you will be updating them regularly, when you are ready, and that you will do your best to respond to texts, calls, emails, or any other contact. Let them know that you see and appreciate their efforts to love you well. Share with them that while you appreciate everything, you may not be able to maintain the kind of communication during this season that you would have been capable of before.

The number one thing I hear from the family and friends of parents who receive a prenatal diagnosis of a life-limiting condition is that they just do not know what to do or say, and they do not want to overstep, upset, or intrude. Your network of support just wants you to know that they love you, they care about what is happening to you, and they want to do whatever they can to support and help you. When you set clear expectations for them about your emotional bandwidth, communication limitations, and needs, you are letting them know that they are needed, that you are grateful for their help, and that you do want them to continue reaching out and offering their support.

Sharing the news of a prenatal diagnosis of a life-limiting condition is not an easy process. You are sharing something so personal, devastating, and scary with the people you live life with every day. I encourage you to share the news, when you are ready, because you do not have to walk through this experience alone. There are people who want to enter in and support you well each step of the way.

There is no right way to share this news, and these guidelines are meant to be a helpful set of tools and insight into this process. Please utilize whatever information feels helpful, supportive, and right for your family.

As you prepare to share the news, it is helpful to have an understanding of your and your family’s needs, preferences and boundaries when it comes to communicating and interacting with family and friends throughout this process. Once you have considered your needs, preferences, and boundaries, share the news and equip your family and friends to support you well. Finally, think through, create, and communicate your plan for on-going communication and support throughout the pregnancy and postpartum and bereavement periods.

Originally posted on: September 17, 2018

The post How to Tell Family and Friends About a Prenatal Diagnosis appeared first on Orangesocks.org.

Carrying To Term was fortunate enough to have the chance to talk with the International Institute for the Advancement of Medicine (IIAM) about their Neonatal Donor Program and the role they play in supporting families who are considering or have chosen neonatal organ and tissue donation as a part of their child’s legacy. IIAM’s Neonatal Donor Program is an incredible example of the importance and benefit of a collaborative approach to caring for bereaved families. IIAM has shared their insights into neonatal donation for research, the impact this gift has on medicine and medical research, and the power this choice holds for families. It is our hope that this conversation sheds light on neonatal donation for research, the options available to parents, and the support that exists to walk these families through every step of the process.

Many families are familiar with organ and tissue donation in the context of transplants. IIAM exclusively works with non-transplantable organs and tissues for the purpose of medical research, education, diagnostics and other scientific use. What are the benefits and impact of neonatal organ/tissue donation for research? How does this option serve and support families who receive a prenatal diagnosis of a life-limiting condition and are seeking a legacy for their child?

The benefit and impact of neonatal organ/tissue donation are many. For the medical aspect, organs and tissues from the early developmental stages allow researchers to understand cell assignment and cell regeneration–two important concepts that will enable researchers to ultimately promote regenerative properties within all human tissue, and thus, enabling the body to heal itself. Consider a baby born prematurely where the lungs do not fully develop. Researchers want to know how they can encourage the lungs to continue to grow, so seeing lung cells so early in development lends insight. This ‘magic’ will also allow individuals who have chronic lung disorders later in life, such as Chronic Obstructive Pulmonary Disorder (COPD), to receive medical treatment that will encourage new, healthy lung cells to replace damaged cells.

For the emotional/family driven aspect, organ/tissue donation allows a family to leave a lasting legacy of a child whose life was all too short, but whose impact will be something beyond our capability to understand. People young and old will be touched by the discoveries made through these donations. Families who have donated find great comfort knowing their little hero may one day change the world the way we know it.

Families who have received a life-limiting diagnosis face a wave of emotion. As the remainder of their pregnancy may be wrought with grief, many family have taken some sense of comfort knowing that their baby may be able to donate organs or tissues. We have heard from donor families that just knowing there was an option for donation gave them hope; somehow their ability to ‘parent’ through medical milestones gave such comfort in a sea of pain.

Why is IIAM so passionate about providing this opportunity to bereaved families? Why do you believe all families should have access to information about neonatal donation for research?

Our passion to assist these special families originated from our very first donor. The power beyond that family’s decision to carry to term and proceed with donation moved everyone, from our own organization to the hospital team to the organ recovery organization. It was a special moment–one where all of the stars aligned, as if this was the beginning of their mission and ours–to advocate for other families facing the same terminal outcome for their baby. I believe their ability to donate changed their lives forever–and they paved the way for over one hundred more families as a result.

There is still very limited awareness of research exclusive to donation from neonates with a terminal diagnosis who are carried to term and die from natural causes. Our hope is that families find information that presents options for them as they face the remainder of their pregnancy.

Not all families have access to care providers who are informed about the opportunities regarding neonatal donation for research. Can families get in contact with IIAM directly to get more information and start the process?

Yes, I believe the internet now has more information that can assist a family with donation options for neonates. Our own information is readily accessible on our website, and there are other websites started by donor families who share their story and point to resources such as IIAM.

“Organ/tissue donation allows a family to leave a lasting legacy of a child whose life was all too short, but whose impact will be something beyond our capability to understand. People young and old will be touched by the discoveries made through these donations.”

There are many medical professionals involved in the organ and tissue donation process, including organ procurement organizations (OPO). What are OPOs, what role do they have in this process, and how does IIAM work in collaboration with them to provide neonatal donation support, information, and guidance to families facing a prenatal diagnosis of a life-limiting condition?

There are 58 organ procurement organizations (OPOs) in the U.S. They are federally designated through the Organ Procurement and Transplantation Network (OPTN) and are managed under contract by the United Network for Organ Sharing (UNOS). The OPOs perform the life-saving mission of recovering organs from deceased donors for transplantation. Because of their primary role in promoting organ donation, and with language on the authorization form completed by legal next-of-kin that includes options for medical research (when an organ may not be suitable for transplantation), the OPO plays a major role in allocating organs for transplant as well as for medical research. The OPO interfaces with the donor family, which may include a neonatal donor family. When the OPO is encountering a neonatal donor family, they contact IIAM and discuss options. Together, we support the family’s desire for donation and exhaust all efforts to see it through.

Neonatal organ and tissue donation for research can be an incredible opportunity for families to create a legacy in honor of their precious baby, but it can also seem really overwhelming and scary for them as well. How does IIAM’s neonatal donation program help parents navigate this experience? What is the process like from initial contact through post-donation?

Because the life-limiting diagnosis is often received well into the pregnancy, there are still several weeks until the baby is due, and the family uses that time to consider options and make decisions. Through the OPO, IIAM presents information about the donation and the research so a family can fully embrace this avenue and make an informed decision. Both IIAM and the OPO then take steps to make a plan that works well with the family, the OPO staff, the family’s doctors, and the researchers who may receive organs and tissues. Many factors must align, but we make sure the family is fully informed so there are no surprises and no disappointments.

Does IIAM and the team member(s) caring for an individual family help the parents understand what tissues and organs could potentially be viable for donation and how that donation might be utilized? Do you provide comprehensive, individualized information about all the possibilities, including the fact that donation may not be an option, as so many factors are not determinable until delivery?

Yes. The most important part of this entire process is transparency. We disclose what is possible but never guarantee. Every family choosing donation should be viewed as a donor family despite the outcome.

Logistical factors may arise that prevent an organ from getting to a research facility in time, and all parties involved are aware. Clinical factors may also arise, specifically that the time organ procurement must occur after time of death. If time of death occurs shortly after birth, a family may choose to spend more time with their baby and forego donation, and we all respect whatever decision a family makes regardless of any anticipated donation. They must be comfortable with their decision and when they are ready to present their baby for organ procurement. There are times when a family spends several hours with their baby prior to time of death, and organ procurement proceeds as planned. As often as possible, and as indicated in a birth plan that may include donation as an option, the family may have a greater desire for organ donation to proceed and ask to spend additional time with the baby afterward.

IIAM works with many researchers who are studying almost every organ and a variety of the tissues that can be donated. Can you share an example of how a neonatal donation has been utilized by one of these researchers and how their work has been advanced by the generous gifts of these families?

To use the example in the first question, IIAM has worked with a research group who have received nearly 100 organs and tissues through our neonatal donor program. Their work is advancing the understanding of lung development and how chronic lung disorders evolve. By studying the many different kinds of cells developing within infant lungs, researchers can see how one cells can signal a neighboring cell which is important in the regenerative medicine space–it shows how they make the ‘get up and go’ conversation happen!

“The most important part of this entire process is transparency. We disclose what is possible but never guarantee. Every family choosing donation should be viewed as a donor family despite the outcome.”

Are there any resources that help medical providers like obstetricians, perinatologists, perinatal nurse navigators, and clinical social workers feel more informed and equipped to navigate neonatal tissue and organ donation and the experiences of these families?

IIAM’s website has many resources to navigate a conversation with a neonatal donor family. We also provide many other resources for the medical professional and family members to consider.

Following a donation, does IIAM or the researchers who have received a family’s gift of organ and tissue donation provide any follow-up information about how that gift is used or how it has benefitted the researchers’ work? Can parents learn more about the researchers and the work they are doing if the parents are looking for that connection?

Through the OPO, IIAM provides a donor family information regarding the donation, the research, and any other information the researcher may have provided. It is not uncommon that a researcher will continue to provide additional updates of a study that was made possible as a result of one of IIAM’s donors. We are very excited to pass that information forward when that happens. With the permission of the OPO and the researcher, we would do our best to facilitate a conversation with all parties involved if more information were requested by the donor family.

Is there anything else that parents and families should understand about neonatal donation for research? What advice do you have for families who are considering neonatal donation for research?

Our message would be that neonatal donation is possible. Medical researchers are grateful when they can receive donor organs and tissues from these very special, very young donors. All parties are profoundly in awe of their decision to consider donation. I don’t know that they will ever quite understand the power behind their decision.

WHO WE ARE

The International Institute for the Advancement of Medicine (IIAM) is at the forefront of providing non-transplantable, healthy and diseased, human organs and tissues to the medical research community for purposes of combatting and curing disease. Working with every organ procurement organization in the U.S., IIAM receives over 15,000 organ referrals for research each year. We enter into unprecedented research collaborations to source livers and other organs for therapeutic applications and pre-clinical investigations targeting a range of debilitating metabolic disorders. IIAM’s breadth of services also includes a Neonatal Donor Program that provides neonatal organs and tissues for medical research, education and development. These neonatal donors are babies with fatal fetal diagnoses who will pass from natural causes shortly after birth, typically with 37 weeks of gestation and greater. This program provides an opportunity for families to leave a legacy of their baby, and offers a unique and invaluable service to researchers in need of these precious tissues.

As a non-profit with more than 30 years of experience in the field, IIAM is a known and trusted partner to both organ procurement organizations and research institutions worldwide. We work closely with them to honor donor and donor family intentions to the fullest by anticipating the next frontier of research requiring human tissue. And we lead the way in educating the next generation of researchers so that every donor’s legacy leaves the world a healthier place. Please visit our website at www.iiam.org.

Carrying To Term is a national 501(c)(3) nonprofit organization dedicated to broadening access to non-directive educational, logistical, and emotional support resources for prenatal diagnoses of life-limiting conditions. For more information, please visit www.carryingtoterm.org.

Originally posted on: April 1, 2019

The post Neonatal Donation FAQ with IIAM appeared first on Orangesocks.org.

You now likely require care from more providers than just your obstetrician. You may have been referred to specialists, nurse navigators, social workers, and palliative care experts. Everything you thought you knew about prenatal care and pregnancy has changed, and it is perfectly normal and valid if you feel overwhelmed by it all.

To help you navigate the process of pregnancy continuation and prenatal care, we have created this helpful guide to preparing for appointments following diagnosis.

GATHER YOUR CARE TEAM

The first step to preparing for prenatal appointments following diagnosis is to understand and gather your care team. As a result of the diagnosis, you now require care, support, and insight from more than just your obstetrician. There are many medical professionals who offer unique perspectives and models of care for parents who receive a life-limiting diagnosis and choose pregnancy continuation. Having a multidisciplinary care team is an important part of prenatal care during your pregnancy. Each provider will help you create a comprehensive and individualized care plan to ensure that you, your baby, and your family receive the best and most supportive care.

Depending on the diagnosis, you may find yourself needing support from:

• a care coordinator
• a perinatal social worker
• a perinatal hospice and palliative care group
• a pediatrician
• a perinatologist or maternal-fetal medicine specialist
• a pediatric geneticist
• a pediatric specialist like a neonatologist, cardiologist, or neurologist
• a chaplain
• a doula
• a licensed professional counselor or clinical social worker

Before meeting with your care team of providers, it is important that you understand who each provider is and what they bring to your care. For more information about the potential members of your care team, please read our guide to gathering your care team found here.

“Having a multidisciplinary care team is an important part of prenatal care during your pregnancy. Each provider will help you create a comprehensive and individualized care plan to ensure that you, your baby, and your family receive the best and most supportive care.”

SCHEDULE YOUR APPOINTMENTS WISELY

Immediately following your diagnosis, you will likely be asked or recommended to schedule a follow-up appointment to discuss the diagnosis and next steps as well as an appointment with a specialist like a perinatologist or maternal-fetal medicine specialist. These appointments are invaluable, as they provide you the opportunity to ask questions, process the diagnosis, and formulate a plan for moving forward.

While it is important to schedule these appointments as soon as possible following diagnosis, be sure to schedule these appointments in such a way that provides you and your significant other some time to process the emotional realities of receiving such a diagnosis. You may find that you need time to explore and process your emotions, review the information provided to you, do some independent research, weigh your options, and consider your decisions before your next set of appointments. You may find that having that time to process allows you to take full advantage of the time you will have with your doctors and specialists during your appointments.

As you begin to schedule your appointments, be sure not to overload yourself by scheduling too many appointments within a single day or week. While you may have to navigate availability and busy schedules, be sure you think through what is best for your own emotional and mental health. If having too many appointments in a single day or week is too much for you, try to space out the appointments in a way that provides you time to rest, decompress, process, and recover between appointments.

Alternatively, you may find that you prefer to knock out as many appointments as possible in a single day or week. That is okay, too. The important thing is to know yourself and your needs.

Additionally, if you think or know that being in a crowded doctor’s office or waiting in a waiting room with other pregnant people might be triggering for you, talk to your doctor’s offices about scheduling your appointments during the lowest volume times or when there might be the option for your wait directly in an exam room. Communicate your needs to the front desk staff and see what they can do to accommodate you. This may not always be an option, but all you can do is ask.

COMPLETE PAPERWORK AT HOME

One of the ways to cut down on the time spent in a doctor’s office waiting room and provide you with the time to process your emotions is to complete your paperwork ahead of time. Many doctor’s offices now offer the option to complete paperwork online. If that option is not available to you, many doctor’s offices will either email you the paperwork ahead of time or allow you to come by (or send someone on your behalf) and pick up the paperwork prior to your appointment.

When possible, complete your paperwork ahead of time, so that you can take your time working through potentially hard and emotionally-triggering questions like pregnancy history, prior medical or family history, or your reasons for this visit.

If you are unable to obtain and complete your paperwork in advance, and you know that pregnancy history, reasons for your visit, or any other questions will be difficult for you, consider writing or typing out your answers to those questions ahead of time. If you have a complicated pregnancy history, list out important experiences and dates in brief bullet points on a notecard or half-sheet of paper and take it with you to your appointment. You can then write “see attached” under the pregnancy history question and give your prewritten paper to the staff when you turn in your paperwork.

Completing your paperwork at home is not a necessary part of preparing for prenatal appointments. It simply affords you the opportunity to shorten your time in a doctor’s waiting room, consider and think through all the questions, and navigate any emotions that may arise while completing the paperwork for your appointment.

CREATE A LIST OF QUESTIONS AND CONCERNS

After you have scheduled your appointments and completed any paperwork in advance, it is time to prepare for the actual appointment. One of the best ways you can prepare for appointments and make the most of the time you will have with your provider is to create a list of questions and concerns that you have and want to ask or discuss with your provider.

Start by listing out every single question and concern you have, regardless of whether or not this particular provider is the right person to ask. Having a running list of questions and concerns will help you process and gather information throughout this process. Once you have your broad list of questions and concerns, start deciding which questions and concerns are best suited to your upcoming appointment. From your original list, create a list of questions and concerns specific to the doctor or provider you are about to meet with.

Once you have your provider or appointment specific list of questions and concerns, decide which 3-5 questions are the highest priority questions on your list. Do the same with your concerns. You will have limited time with your doctor, and you will likely be unable to get answers to all of your questions. By prioritizing your questions and concerns, you can ensure that you get the most pressing and important information from this appointment.

You may find that each appointment leaves you with more questions than before. That is okay and too be expected. This process can be complex and complicated, so it makes sense that you would have on-going and ever-evolving questions. Following each appointment, as new questions arise, add them to your running list of questions.

As you get questions answered, write the answers down underneath the question. As you research and find answers to your questions on your own, write those answers down underneath the questions. When you do this, you are creating a valuable resource for yourself throughout this process. This running list of questions and answers allows you to refer back to the information you have gathered, the answers you have found on your own, and the questions you still need answers to.

Knowing what questions to ask throughout this process can be challenging. When you have been given such an overwhelming and life-changing amount of information, it can be hard to know where to start, what questions you have, and even what questions you should be asking. To help you prepare for your appointments and create your own list of questions, Carrying To Term has created a list of questions which you can find here.

“You will have limited time with your doctor, and you will likely be unable to get answers to all of your questions. By prioritizing your questions and concerns, you can ensure that you get the most pressing and important information from this appointment.”

PLAN TO UPDATE YOUR PROVIDER

In addition to preparing for your appointment by creating a list of questions and concerns, be prepared to update your doctor about anything that has occurred between appointments. Your doctor will check in with you on your physical health, any concerns or changes in symptoms that you might have experienced. Your doctor will likely check in on your emotional well-being to assess how you are processing, navigating, and coping with everything that is happening. Your doctor may also ask about your social support systems and any changes that have occurred or additional support you may need.

If you have had any appointments with other doctors or specialists, tours of the hospital or neonatal intensive care unit, or any consults with a palliative care team, social workers, or nurse navigators, prepare to update your doctor on any important aspects of those appointments, tours, or consults. If the other offices have not already done so for you, plan to bring or send any relevant records from those appointments in advance to the appointment you are preparing for. This allows your doctor or care provider to ensure that they are fully informed about your care and aligned with the other members of your care team.

The best way to prepare yourself to update your doctors and providers throughout the process of pregnancy continuation is to keep a journal. Write down any symptoms, changes, concerns, notes from appointments, or any other information relevant to your pregnancy and your physical, emotional, and social health. Bring this notebook with you to appointments as a reference and a place to take additional notes.

TAKE NOTES

As you have been preparing for your appointments, you have been writing down questions, concerns, and any information that you need to update your doctor on. Taking notes is an important part of this process as it helps you think through elements of your experience. These notes serve as a record of your experience and any details that arise throughout the process.

In addition to taking notes in preparation for your appointments, you should plan to take notes during your appointments. When your doctor provides answers to your questions or insight on your concerns, write down the key information. Appointments can be a whirlwind experience, complete with more overwhelming information. You likely will not remember everything said in each appointment, so having notes can be critical to remembering details and processing them later.

If you find yourself unable to listen to and engage with your doctor while also taking notes, that is okay. Prioritize listening and engaging with your doctor. Before the appointment ends, ask your doctor for a quick verbal summary of the discussion, and take notes then. If you have taken notes throughout the appointment, this is a great time to be sure your notes align with the summary of information and confirm that you have written down everything you need to remember. Before leaving your appointment, be sure to also write down any follow-up instructions your provider gives you, and ask for written copies of any instructions or orders for labs or other tests. These notes will help you remember all of your follow-up instructions and plan for any further testing, labs, or referrals that might be needed.

CONSIDER BRINGING A SUPPORT PERSON

As you think through preparing for your appointments, consider bringing a support person with you to each appointment. Your support person can be anyone you choose: your significant other, a parent, a family member, a friend, or any other member of your network of support.

Having a support person present at appointments can help you retain and process information better. Your support person serves as a second set of ears to listen to information and help you remember all that was discussed. Your support person can also help you by remembering your questions and by taking notes throughout the appointment. They can also be there for you after the appointment to help you process, fill in your notes, and offer any emotional support you may need.

Your support person can be the same person or a different person for each appointment. That is entirely up to you. You do not have to navigate these experiences and appointments alone, and there truly is benefit in having someone present with you at each appointment.

“Having a support person present at appointments can help you retain and process information better. Your support person serves as a second set of ears to listen to information and help you remember all that was discussed. Your support person can also help you by remembering your questions and by taking notes throughout the appointment. They can also be there for you after the appointment to help you process, fill in your notes, and offer any emotional support you may need.”

RECOGNIZE LIMITATIONS

As you prepare for your appointments, it is important to recognize that each appointment comes with limitations. Your appointments and time with the provider are likely never going to feel like enough time or as comprehensive as you might like the information to be.

Doctors and providers face time constraints, heavy caseloads, stresses, and other commitments and responsibilities like being on call for deliveries or emergency surgeries. It is important to set your expectations and remember that your doctor is doing the best they can to provide you with the best, most supportive, and comprehensive care. Be mindful of their time by preparing in advance, being specific in your information, and recognizing limitations. While it is important to be mindful of your doctor or provider’s limitations, it is also important to advocate for yourself, your baby, and your needs at each appointment.

If you know that you will need extra time with your doctor or provider during a specific upcoming appointment, ask the front desk staff if they would be able to schedule a longer appointment time for you. If you find yourself needing more support in the form of social workers, counselors, nurse navigators, or palliative care, speak up and ask for those referrals.

If you were unable to get all your questions answered, concerns addressed, or you feel like you have more questions now than before your appointment, advocate for yourself by asking your provider if they have a patient portal through which you can communicate with them. You could also ask if the provider might be willing to provide you with an email address to send questions or concerns in between appointments. If your provider does not offer either a patient portal or an alternative way to get in contact between appointments, know that you can always call the office when concerns or pressing questions arise and speak with a nurse or other provider.

Finally, if you feel that your doctor is too busy, does not provide you with enough time to ask questions or discuss concerns, or just that you do not click well, you have the right to find a new doctor. Your care team is your care team. You get to advocate for yourself by creating a care team of providers that you feel comfortable with and supported by. Ask your primary care provider for a new referral or ask your specialist for a recommendation for a new primary care provider. Not every doctor or provider will be a good fit for you in this process. It is okay to change providers until you find the right ones.

PRACTICE SELF-CARE

The final part of preparing for appointments is recognizing your need for self-care. This process of preparing for appointments can be draining. The appointments themselves can be draining. When you find yourself feeling emotionally or physically drained, take some time to care for yourself.

Self-care comes in many forms and looks different for every person. You may find that you need to take a mental break from preparing for an appointment or after attending an appointment by reading, watching a movie or TV show, or listening to music. You may find that you feel physically exhausted from this process, and you need to practice physical self-care by taking a nap, enjoying a relaxing bath, or feeding your body a nourishing meal. Self-care can also look like going for a walk, reaching out to a trusted friend or family member to process, going to counseling, attending a support group, journaling, attending your faith’s church or a faith-based event or group, or taking some time to be alone. For more specific examples of emotional, physical, spiritual, and social self-care, please read our post found here.

The process of preparing for and attending so many prenatal appointments following a diagnosis of a life-limiting condition is challenging, overwhelming, and at times, exhausting. The best thing you can do for yourself is to recognize the realities of this process, honor your feelings, process new information, and navigate this experience however you need to. There are no right answers here. Only you will know what you need to do to feel prepared for each appointment. We simply recommend that you consider preparing for your appointments by gathering your care team, scheduling your appointments wisely, completing your paperwork at home, creating a list of questions and concerns, planning to update your provider, taking notes, bringing a support person, recognizing limitations, and practicing self-care.

Originally posted on: December 10, 2018

The post Preparing for Appointments Following Diagnosis appeared first on Orangesocks.org.

There are very real and important practicalities to consider following a prenatal diagnosis of a life-limiting condition and the news that you will lose your baby. You will navigate complicated situations. You will advocate for yourself and your baby. You will work with medical professionals to provide the best care to you and your baby. You will bear the weight of the expectations of real life, relationships, and work. You will experience anticipatory grief. You will face a loss so devastating that no other loss compares to it. There is no doubt that what is being asked of you is heavy, complex, and difficult. This process is hard, but it is also rewarding.

Parents, your world has been turned upside down by the news that your baby has a life-limiting condition. After receiving the diagnosis, you have been given new terminology and medical information to process. You have been and will be faced with making complicated decisions. You are beginning to wrap your heads around pregnancy continuation and a care plan that includes more doctor’s appointments, specialists, and questions than you ever imagined navigating when you first learned of your pregnancy.

While the decision-making, planning, care plans, and the physical nature of pregnancy and the diagnosis are important, your experience as parents and as a family is worthy of attention and care, too. It is true that pregnancy continuation is hard, emotionally-nuanced, and complicated, but do not believe that it is without joy. It can be easy to get lost in the chaos, practicalities, and medical aspects. It can be easy to lose sight of what is present in each moment because you are anticipating what is to come.

Parents, it can be easy to believe that all that awaits you is confusion, difficulties, suffering, grief, and ultimately, loss. While it is true that what you are facing is unfair and devastating- a truly broken reality- there is beauty, joy, peace, and unceasing and unwavering love to be found in this process, too.

Truly, I wish this pain was not your pain. I wish you could have a lifetime with your son or daughter. I wish this was not your story. But, we do not get to choose our circumstances, we only get to choose how we write the story that follows. There is no choice following a prenatal diagnosis of a life-limiting condition that will get you the outcome you desire: taking a perfectly healthy baby home with you to raise and spend a lifetime with. While the outcome of pregnancy continuation is still loss, this choice allows you to embrace and celebrate your baby as parents, as a family, and as a community.

This is not an easy choice nor is it an easy process, but it is a choice that you will not regret. A parent never regrets the time they spend with their child. A parent never regrets the chance to know their son or daughter, no matter how fleeting that time may be. A parent never regrets making memories with their family. A parent never regrets the legacy of love each child creates.

Pregnancy continuation is not about waiting for death. It is about living and loving and celebrating life, no matter how short that life may be. You have every right to embrace and celebrate each and every moment, exactly how you choose to. There is no right way to love your baby. There is no right way to embrace the time you have. There is no right way to celebrate life in light of what is to come. There are only the ways that are right for you, your baby, and your family. Only you can determine what embracing and celebrating your baby looks like, I simply encourage you to do three things: be intentional, make memories, and give yourself permission to experience joy.

“Pregnancy continuation is not about waiting for death. It is about living and loving and celebrating life, no matter how short that life may be. You have every right to embrace and celebrate each and every moment, exactly how you choose to.”

BE INTENTIONAL

Being intentional means making the deliberate, conscious decision to be present in the process. When you are intentional in your focus and with your time, you are holding space for what matters most. Start by focusing on what you do have, right now, in this moment. Right now, you have your baby. Does your pregnancy and future look like you imagined or wished? No, but that does not mean that your pregnancy and your time with this baby are without good moments, laughter, joy, and love.

The ferocity and depth of your love for this baby has not changed nor has it been diminished. You do not have to change how you love or how you parent this baby. What has changed are the circumstances that now limit the time you get with this baby, and the only thing you can control in light of that is how you spend this time.

So, give yourself the permission to let go of what does not matter right now. Put aside the things that can wait. Ask your friends and family to help you with anything and everything they can to free up your time and energy. Being present with your baby during pregnancy and after delivery is the greatest act of love and parenting. It is the most important thing you can do.

Being intentional is not without difficulty, and if it feels emotional or overwhelming, that is valid, and you are not alone in that feeling. Being intentional is a calculated risk because you are opening your heart, knowing full well that you will be hurt in the end. This is an experience unlike any other, so if being intentional does not come easy to you, it is okay. Be patient with yourself. Keep trying. Carve out tiny spaces in your day- simple moments- where you stop and engage. Count kicks. Learn the intricacies of your baby’s movements and habits. Talk to your baby. Place a hand on your pregnant belly- or your significant other’s pregnant belly- and just be still and feel.

Being intentional is simply about being present. It is about prioritizing this time and your need to be with your baby. It is about embracing and accepting the emotions as they come throughout this process. It is okay and normal to experience a range of emotions. Being intentional does not mean you that will not navigate feelings of numbness, anger, sadness, frustration, confusion, anxiety, hope, peace, or even joy. It means that you simply acknowledge how you are feeling, let yourself experience those feelings, and then use those feelings to guide you as you plan for the future.

MAKE MEMORIES

Making memories is a practical application of intentional living in this process. The memories you make with your baby during pregnancy and the time you will have after delivery are yours for a lifetime. No one can change your memories. No one can take your memories from you. Your memories are priceless treasures. They are what remains of your time as a family.

One of the most painful realities of infant loss is that time and the ability to make memories are finite. Losing a baby is the loss of a future, and by making memories and being intentional, you are giving yourself something to look back on as you navigate life after loss. Create as many memories as you can. Make as many keepsake items as you can and want to.

Do the things now, in pregnancy and then after delivery, that you will need later. These are the memories that will serve to remind you of the love, the joy, and the very real fact that your baby existed. There will come a time when your mind is consumed by the loss of him or her. Your memories will serve as the anchor, holding you to the moments you carried and held your baby.

There will come a time when the details start to fade or feel less accessible or less tangible. Your memories and your keepsakes will serve to remind you of all that you endured, of how intensely you loved, and of how incredible and life-changing the moments you had with your child were. Your memories and keepsakes are not designed to replace having a child in your arms. They are there to help you bear the weight of a loss of this magnitude. Being able to pull out photos or journals or precious imprints of tiny hands and feet will give you something to hold and help you remember.

Making memories and keepsakes may feel overwhelming, emotional, and even complicated, but remember that this desire to do so is no different than the desire that parents feel when making memories in a pregnancy without a diagnosis. This is a natural part of creating a life, becoming parents, and building a legacy of love for that baby. There is nothing morbid or broken or wrong about documenting your experience and making memories with your baby.

Your pregnancy, your story, and your child are no less worthy and no more taboo than any other pregnancy or any other experience of a parent loving a child.

Take the time to do the things that matter to you and that you have always wanted to do with your family. While pregnant, go to the park and swing on the swings. Visit the zoo, go to the movies, or enjoy a sporting event you love. Take a trip to the place that means something to you and your family.

Take pictures of every stage and every milestone and every event. Journal all the little details that you will want to remember. Talk to your baby. Listen music and dance. Have a celebration of life and invite your community of family and friends into the beauty that is the life you have created and the love you are embracing.

After delivery, spend the time you will have with your baby making more memories. Take pictures as a family. Marvel at how much he or she looks like you or your significant other or his or her brother(s) or sister(s). Invite your family and friends to see the little wonder of a life that you created.

Hold your baby for as long as you want to. Bathe and dress him or her in an outfit of your choosing. Read your favorite childhood books. Sing the songs you always pictured singing as you rocked him or her to sleep. Study his or her features and take pictures of the details. Little nose. Tiny fingers and toes. Save a lock of hair. Take many sets of handprints and footprints. Make molds of his or her hands and feet.

This time is precious and beautiful and worthy of being remembered. Yes, the emotions will be complicated. There will be grief and joy. There will be beauty and broken. There will be hello and goodbye. Yes, this is a complicated and complex experience, but it is the most natural thing in the world to hold your baby and want to fit a lifetime of parenting and memories into these moments.

The choice you have made to continue your pregnancy is not about waiting for death. It is about giving yourself and your baby the gift of time and memories. While you cannot change the diagnosis, and you cannot control the future, prognosis, or outcome, you do get to choose how you spend this time. Time is precious. Your baby is precious. Your memories are precious. Make as many memories as you can in the time you are given.

“There is nothing morbid or broken or wrong about documenting your experience and making memories with your baby. Your pregnancy, your story, and your child are no less worthy and no more taboo than any other pregnancy or any other experience of a parent loving a child.”

GIVE YOURSELF PERMISSION TO EXPERIENCE JOY

There will be moments, news, and experiences that feel good in this process. Celebrate them without hesitation or reservation. Even the smallest of victories is worthy of being recognized and celebrated. You deserve to experience joy. While this diagnosis and the impending loss of your baby is life-changing in the worst way, you are not sentenced to a life without joy. You are allowed to smile as you carry this baby to term. You are allowed to laugh when you feel kicks. You are allowed to feel unadulterated joy when you hold this baby for the first time and fall deeply in love with the miracle you brought into this world.

You are allowed to enjoy time with your significant other, your family, and your friends throughout pregnancy and in life after loss. You are allowed to find yourself again and live and thrive despite all that you have been through.

The diagnosis, the prognosis, and the loss of your child are broken experiences. Your child is not broken. You are not broken. You may never feel whole without your son or daughter, but you are not broken or imprisoned by this loss. You are free to experience joy. You are free to love and remember your baby. You are free to share your story and feel however you feel in the process. You have the full and free permission to grieve and live a life that includes joy.

So, allow yourself to experience joy and celebrate the good.

Celebrate the gift of a wonderful and supportive care team of medical professionals. Celebrate when you advocate for yourself and your baby by speaking up, offering insight, or finding a different provider to work with. Celebrate when your network of support steps up to meet your needs, and celebrate yourself for asking for that help. Celebrate milestones in pregnancy. Celebrate a healthy, strong heartbeat and the visuals of intrauterine acrobatics on display during an ultrasound.

Celebrate the little joys as life continues. Celebrate successes at work. Celebrate finding a new restaurant or cooking a delicious meal. Celebrate the achievements of your kids as they live life through this process. Celebrate finding balance. Celebrate accepting your emotions as they come and recognizing your needs for self-care.

Celebrate your precious baby. Today. Tomorrow. Always.

You are worthy of joy, and your baby is worthy of your joy. You are worthy of grief, and your baby is worthy of being grieved. Grief and joy are both rooted in a deep, unconditional, and unceasing love, and there is no deeper, more unconditional, or unceasing love than that of a parent for a child.

Originally posted on: November 12, 2018

The post The Choice to Carry To Term: Embracing and Celebrating Your Baby appeared first on Orangesocks.org.

Carrying To Term believes that clear, compassionate, and easy to understand language has the power to shape how parents process a diagnosis, make fully informed choices, and cope following diagnosis, throughout pregnancy, and in life after loss. When parents understand what is happening, they are better able to connect with their providers, navigate their experience, and communicate with and get support from their network of family and friends.

Prenatal diagnoses that lead to the death of a baby have been presented using a variety of terms and phrases, including terminal, incompatible with life, lethal, fatal, and even the word poor, however, the current medical practice is to use the term life-limiting. Carrying To Term, in alignment with medical practice and standards, uses the term life-limiting across our website, resources, and support. To help you fully understand the term life-limiting in the context of prenatal diagnoses, we are providing a deeper understanding into what life-limiting means and why it is the standard terminology.

“Carrying To Term, in alignment with medical practice and standards, uses the term life-limiting across our website, resources, and support. To help you fully understand the term life-limiting in the context of prenatal diagnoses, we are providing a deeper understanding into what life-limiting means and why it is the standard terminology.”

WHAT LIFE-LIMITING MEANS

Life-limiting is an adjective used to describe a medical condition that is without a cure and is expected to cause a person to die earlier than expected.

When used in the context of prenatal diagnoses, life-limiting refers to a condition that is without a cure and in which death is expected for the baby within the perinatal period. The perinatal period is generally defined as the time before and shortly after birth. Though the exact parameters vary, the common consensus is that the perinatal period refers to the time between the 20th week of pregnancy and 4 weeks after birth.

When we use the term life-limiting, we are referring to a condition that leads to the death of the baby, typically, though not always, in the perinatal period. It is important to distinguish prenatal diagnoses that limit the duration of the baby’s life from conditions that might impact the quality of the baby’s life but not necessarily the duration of the baby’s life.

Prenatal diagnoses like spina bifida and Down syndrome can be considered life-limiting, even when the duration of life is not necessarily limited, as the quality of life varies based on severity, co-diagnoses, and even the effects of early interventions. Prenatal diagnoses like cystic fibrosis can be considered life-limiting, as it can affect both the quality of life and the duration of life due to complications and risks secondary to the diagnosis itself.

We believe that clearly distinguishing between quality of life limiting and duration of life limiting diagnoses is both compassionate and critical. It is compassionate because giving or be given hope based on false understanding is devastating. It is critical because understanding that a prenatal diagnosis of a life-limiting condition is fatal for the baby means that parents can process information, ask questions, and make fully informed choices all while embracing the time they will have with their child, no matter how brief.

“When we use the term life-limiting, we are referring to a condition that leads to the death of the baby, typically, though not always, in the perinatal period. It is important to distinguish prenatal diagnoses that limit the duration of the baby’s life from conditions that might impact the quality of the baby’s life but not necessarily the duration of the baby’s life.”

WHY LIFE-LIMITING IS USED

Life-limiting is considered to be the most compassionate, yet still clear, term for diagnoses that lead to the death of a baby. The words terminal, lethal, and fatal are technically and medically accurate in the vast majority of cases, but for some families, the words lack a sense of empathy and compassion that helps them hear and process information. When parents do not feel supported or as though their provider empathizes with their situation, it can be difficult for parents to trust their providers, listen to the information being presented to them, cope with the diagnosis, and make informed choices. Life-limiting has been embraced as the more compassionate and less emotionally traumatic way to explain a prenatal diagnosis that leads to the death of a baby.

Incompatible with life is another phrase that has been used to describe a life-limiting prenatal diagnosis, but it is not a medical diagnosis. Rather, it is a statement of opinion or judgement, implying that the diagnosis and life cannot coexist in any meaningful way. Pregnancy continuation is about embracing the time- the life- parents will have with their child, no matter how brief. Parents can make a life full of memories with their unborn baby. Parents can celebrate the moments they will have with their baby after birth, even if their child is born still or only lives for a brief period of time. Depending on the diagnosis, parents may get hours, days, weeks, months, or even years with their child. Therefore, incompatible with life is an unclear and often inaccurate phrase that can heighten anxiety, compound grief, and unduly influence the choices made by parents following a diagnosis.

Life-limiting is the most inclusive phrase, encompassing diagnoses that may lead to a still birth, diagnoses in which the baby may live beyond the perinatal period, and every diagnosis in-between. Life-limiting acknowledges the devastating realities of the diagnosis while honoring the parents’ opportunity to embrace and celebrate the moments they will have with their child.

Originally posted on: February 18, 2019

The post Life-Limiting: Understanding the Terminology appeared first on Orangesocks.org.