Finding out your daughter has Down syndrome

Erick didn’t find out about her diagnosis until after she was born. 

Erick said, “Maybe five minutes in. I remember the doctor, she actually said “I don’t know but it seems like your daughter might have Down syndrome. I have a feeling from what I’m seeing.” My reaction was “okay, she can be wrong, or she can be right, but she looks healthy so that’s fine.” 

But then, when it really hit me was when I looked at my wife and I saw her face. She was freaking out, she was silent. She is really good at controlling her emotions, but yeah, I still remember her eyes when she looked at me and that really hurt. That hit me like a ton of bricks, that is when I realized yeah, we may have a problem here.”

Ongoing medical issues

Erick’s family was very supportive. They didn’t care if Erika had Down syndrome or not, the problem wasn’t her Down syndrome but her other health challenges. Erick explained, “The issue was that she was not digesting her milk. So basically, she was regurgitating constantly, and we were like “why is she doing that?” and she started losing weight and it got to the point where the doctor told us “Something is wrong.” 

He continued, “They ran tests, and they were pretty blunt, they told us “She might die.” Erika had a successful microsurgery that cleared a blockage in her duodenal passage that allowed the milk to be absorbed. She continued to have health problems as time went on. Erika developed something called Thrombocytopenia. Erick said, “there is this agent in the blood that she lacked at the time. That agent basically keeps you from bleeding through your pores. So, it seems like she had a little rash, when I reality she was basically bleeding at a microscopic level.” 

That has since cleared up, but she now has hypothyroidism. 

How their other children have been affected

Erika is Erick’s third child. Erick explains how Erika’s birth affected her older siblings. 

“Well Wendy was one year older than Erika was so Wendy didn’t understand. Wendy was born with Asperger’s. At the moment, we had no idea that she had Asperger’s. But Keira the oldest she was in love with her. I still remember she brought her this little plushie pink baby toad and it reminded me of her. When Erika was born, she had this pinkish hue to her skin, so we said, “Oh this kind of looks like you.” And we were always playing with her. But she loved her little sister and even to this day you know she takes care of her, and they have a good bond. It is a beautiful thing.” 

The joys of a Down syndrome diagnosis 

Erick said, “Everything collided in this harmonious way. A lot of things that were amiss, and situations with other family members, everything came together. She brought that type of harmony into our home and to this day she is the light of this house. She is always making us laugh, she sees that, and she is pretty intuitive. If she sees that someone is sad or something, she will approach you and do or say something just to make you smile. 

Advice for a parent with a Down syndrome diagnosis

Erick wants people to experience being with a beautiful person who is full of joy and love. 

He said, “If I were able to build a time machine I would go back and tell myself, “Brother you have won the lottery.” And I would love to tell people watching us right now that these children will bring more joy to your life than anything negative that you might be thinking in your mind. Let the fear go. Because this situation is only going to make you a better human being. It is only going to make your family come together as nothing else can. The moment that you don’t see your child even if it’s because you’re on a trip or a business trip or whatever, you miss them so much. 

He continued saying, “If you are a parent that is actually thinking that maybe you shouldn’t have this child and you are scared, which is normal, don’t be. Just let them come. They will change your life for the better. Don’t miss out on that opportunity because you will regret it if you do and as a friend I really hope that you don’t have to go through that pain, the pain of knowing that you could have been surrounded by a beautiful being that is full of joy and love and nothing will be able to basically supply that source of happiness and have that baby, take care of them.”

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Living With an Unofficial Diagnosis

Positivity Despite Serious Medical Conditions

Mason is a medically complex 20-month old.  Despite all his diagnoses and difficulties, Kaitlin says, “Nothing has held him back from being the happiest child.”  His happiness is contagious to anyone who interacts with him.

One of the people most affected by Mason’s condition is his brother. “I’ve never seen his older brother so loving and so happy until Mason came into his life,” said Kaitlin.  Matthew is always quick to introduce his brother, Mason to his friends and always holds his hand. Kaitlin is so grateful for the love her boys share.

Trials Have Also Brought Blessings

Their extended families have been supportive from the day Mason was born.  Kaitlin’s mom is the only one, other than her husband, who can watch Mason, which Kaitlin says, is a Godsend.

There are some family members who haven’t truly understood Mason’s diagnoses.  They believed once Mason hit a certain milestone, he would function more normally.  It has taken time for them to realize that will never be the case. Instead, they are learning how to better support Kaitlin and her family.

On top of extended family support, Matthew’s school has done fundraisers and Christmas parties to give back to the hospital that’s helped Mason throughout his life.  Kaitlin says the kindness and generosity at fundraising events are “emotionally overwhelming” and she is grateful for their help.

Complications of Parenting a Child with a Chromosome Deletion

Kaitlin and her husband have not slept in the same bed since Mason was born. Mason has heart failure, doctors said it was likely he could stop breathing during the night. The thought terrified Kaitlin so she sleeps on the couch by Mason’s bassinet every night.  She has woken up many times to him not breathing. It is a sacrifice and a struggle but Kaitlin and her husband are willing to do it. 

“It’s a full-time job between calling insurance companies and making sure my son is getting what he needs,” said Kaitlin.  Even though he has a genetic disorder, chromosome deletion, Mason hasn’t been given a specific diagnosis.  This makes it hard for specialists and insurance companies to determine what medical equipment Mason needs to have. Despite all the struggles, Kaitlin said, “…all the positives really outweigh all the negatives.”

Fear for Child with Double Chromosome Deletion

On his 11th chromosome, one of the deletions is a whole gene deletion called the SDHD gene. This deletion increases Mason’s chances of hereditary cancer.  Unfortunately, cancer runs in Kaitlin’s family. The possibility that Mason will more than likely have to deal with cancer at some point in his life is reality daunting.  He has endured so much already, but Kaitlin is confident they will find their way through.

“That is Your Child and You Will Do Everything for Them”

Don’t shy away from asking questions.  Kaitlin says, “You are your child’s voice,” you need to be the one to stand up for them.  If medical professionals can’t give you the answers you want, find a support group of fellow parents.  Kaitlin wished she had taken advantage of this sooner than she did. She was never turned away when she had questions for other families in similar situations.

Don’t doubt your strength and abilities.  Many people have said to Kaitlin and her husband, “I don’t know how you do all this!  I would never be able to!” Their response is always, “Yes you can. That is your child and you will do everything for them.”

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Chromosome Deletion 9Q: A Very Rare Condition

Being unique in the world

At an ultrasound performed at 12 weeks gestation, Maria found out that her unborn son had a cleft palate. An umbilical abnormality was found in a follow-up ultrasound. Genetic testing was recommended but testing was limited due to miscarriage risk.

Once he was born, they did a full blood panel and found he was missing a large part of his ninth chromosome off of the q branch. “Most deletions on the ninth chromosome are on the p branch, so it is rare that his is on the q branch,” said Maria. “It’s also the biggest piece missing that they’ve found so far.”

Other people have similar deletions, but they are often smaller, and none have the exact deletion as Chase. He is unique in the world.

Wanting your child to be as healthy as possible

When Brandon found out their child was going to have some disabilities his first reaction was to hope he would be healthy. “I’m not one to dwell on any negatives, just get him here, and I’m going to love him however he comes,” said Brandon. “Our main concern was that he was going to make it, because there was a slight chance that he wouldn’t even survive birth.” Fear of the baby being stillborn was Brandon’s greatest worry.

Keeping track of appointments is one of the hardest things about having a child with special needs

“Probably the hardest is how many things I have to keep track of, like doctors’ appointments. Over the course of his life, he has probably had 20 specialists,” said Maria. “We were kind of narrowing it down a little bit to 15, but we were at the hospital a lot.”

Chase, who is 3 years old, has had 10 surgeries and with each surgery he has had at least five procedures done. He has several appointments each week with hospital therapies and surgeries. “Staying on top of his appointments. He’s an easy kid, really low-key, and super lovable, so probably the hard part is just how busy he keeps us,” said Maria.

Having multiple physical challenges

Chase was born with a severe cleft palate and has had multiple surgeries to fix it. “His cleft lip was pretty severe when he was born. It’s a bilateral lip and palate, and so far, they’ve fixed his lip and soft palate, but his hard palate is still open,” said Maria. Because of the palate problems Chase is fed through a G-tube.

Chase also has heart problems, an intellectual disability, and he is blind and deaf. He also has several more surgeries in the future. “A lot of cleft work, and then he’ll eventually need some sort of kidney surgery,” said Maria. “His right kidney is pretty much shriveled up and decaying. He’s got his hard palate to be repaired, and he’s got an underbite, so they’ll have to break his jaw and pull it back.”

Boy who loves being on the floor

“I love holding him because he’s just super lovable. It took him a long time to smile, probably eight months, but once he started smiling and doing it consistently, that really brought us a lot of joy,” said Maria. “Any times he smiles today, it light both of us up, because it’s still few and far between, but he’s doing it a lot more regularly now.”

Chase loves being on the floor, especially with his little brother. “His little brother is 15 months old, and he just crawls all over Chase. He loves him to death, and they are just best friends,” said Maria.

“He’s on the carpet and in his world and he’s happy. That’s the best thing in the world. He gives hugs, and if he’s close to you, he’ll just grab hold of you and just hold you really, really tight,” said Brandon. “It’s an awesome thing to see him happy when he’s in his own little world, and smiling, and making noises and stuff like that.”

Having a great impact on your family

Maria remembers her dad having great concerns before Chase was born. “He was praying that things would get better and things wouldn’t be as bad as it seemed,” said Maria. But each ultrasound revealed more things wrongs with Chase. “My dad finally realized that he’s supposed to be like that, he’s supposed to come teach us stuff, and that’s all he has been doing. He’s amazing. He teaches us new things every day, like patience and deeper amounts of love.”

You can’t dwell on the negatives

“Any advice I would give a parent is that you really can’t dwell on the negatives. Take it one day at a time,” said Brandon. “You just have to take each day as it is and know that some are going to be great and some are going to be on the downside.”

Brandon works hard at looking for the positive. “I talk to him like he’s normal even though he can’t hear. I treat him like he’s normal even though he’s not, and I want him to feel like he’s as normal as he’s supposed to be,” said Brandon. “Technically he is special, but that’s just my son, and that ‘s all he’s ever going to be to me regardless of whatever his condition is.”

Maria also feels like taking one day at a time is important. “I used to be a very structured, scheduled person, and even throughout my pregnancy, Chase would not allow me to be…I just had to learn to take it a day at a time,” said Maria.

Both Brandon and Maria feel it is important to ask questions when you see someone with a disability. “I like to educate people and share with them the knowledge that I have obtained, because it might help them,” said Brandon. “It’s no secret, and nothing to hide, so share what you have and hopefully it can impact somebody in a way they need…and give them assurance or some help.”

Maria wants people to know that people with disabilities are people too. “Don’t teach your kids to look away, because they are people, and once they get to school and see kids who are different, they are going to think that they need to look away and not be their friend, and that’s not what you want to encourage,” said Maria.

Maria also wants everyone to know that these children who come into our lives are amazing. “They will bless your lives more than anything you could ever give back to them.”

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Misdiagnosis Could Have Cost Baby His Life

Multiple doctors and several family members said Dawn should end the pregnancy.  “I think the worst part was all the things family and friends said and how some made it about themselves,” Dawn said.  A particularly hurtful comment was, “I can’t sleep or eat over your decision to keep the pregnancy.”  No one understood that Dawn would rather have five minutes holding and loving her child then ending the pregnancy and never seeing him.

The amniocentesis results came back a few weeks later.  Dean did not have Trisomy 13.  They were encouraged to abort the pregnancy again because of a few abnormalities.  “I couldn’t help but question if they were wrong again,” Dawn said.

Dawn was full of fear the day of her c-section.  “The fear of the unknown is awful,” Dawn said.  Much to her surprise, Dean was a perfectly healthy eight-and-a-half pound baby boy.  A scan revealed small cysts in the choroid plexus of the fetal brain which is harmless.  He also had a small hole in his heart which has since closed up.  Dean was misdiagnosed a second time.  If Dawn and her husband had followed everyone’s advice, they would not have a healthy 15-year-old boy.

Special Babies go to Special People

Dawn remembers how horrible it was being told her baby would not survive.  She knows many expectant parents are given this news every day.  She also knows how fortunate she is that Dean was misdiagnosed.  “God only gives special babies to special people.  I have admiration for all the parents who deal every day with their child’s health needs.  They are the heroes.”

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Children are More Than a Stack of Symptoms

Thinking Everything is Normal

At the 20-week ultrasound, Sarah was told there were a few red flags with her baby.  Their doctor referred them to maternal fetal medicine where they ran additional tests. After a level two ultrasound and blood work she was told, “..your baby looks great, like no worries.  Just enjoy the rest of your pregnancy.”  

Sarah continued on with her pregnancy thinking everything was normal with her daughter.  “When she was born, we noticed she was different from our first daughter.” said Sarah. Before she was born, they had been told that each baby was different and to not compare her to her sister.  However, as time went on, Sarah became more concerned with her development.

Globally Delayed at Two Months Old

There were a few concerns Sarah discussed with Betty’s pediatrician at her two month check up.  “One thing that she had was a hernia..she also had a weird choking, coughing, gagging thing she would do.  She wasn’t smiling and she wasn’t looking at us.” Sarah said.

Thinking the hernia was a big concern, they were shocked when the pediatrician said, “This little hernia looks like a big deal but it is the least of your concerns.”  At the top of the early intervention pamphlet he gave them, he wrote ‘global developmental delays’. Something Sarah questioned, “How could she be globally delayed at this point already?” 

No Answers After Months of Testing

Early intervention was helping Betty progress, however, her progression was very slow.  This led Sarah to question if there was more going on. Their pediatrician referred them to several specialists who ran an array of tests.  Betty received a CAT scan, MRI, chest x-ray, and several others. To their disappointment, everything came back normal.

Sarah was becoming desperate for answers. She said, “We felt that we were dealing with a potentially really scary thing..Part of that just made everyday harder because any time she would get a little rash or have a new cough of something, we were like, ‘Oh no, is this the beginning of a manifestation of some huge thing that we just haven’t discovered yet?’”.

Not wanting to pay out of pocket for genetic testing, Sarah and her husband waited until the insurance would cover it.  Finally after a geneticist requested testing, their insurance agreed to pay for it.  

Feeling Indifferent Towards the Diagnosis

After searching and waiting for an answer to why Betty was struggling, Sarah said she wasn’t that relieved when they finally received a diagnosis.  Betty is missing part of her 11th chromosome which is associated with Potocki-Shaffer syndrome.  

“Before she was diagnosed, I was desperate to have a diagnosis.  I thought if we find out what it is, then we’ll have an action plan, a road map.  We’ll know what to expect; we’ll know what to do to help her. That just wasn’t the care because it’s so rare with such a huge spectrum of outcomes that really we just had a name for it, but we had no other information.”

How rare was her diagnosis? At the time she was diagnosed, there were only four other known cases in the world.  Only one clinical study had been done on the syndrome and all Sarah was given was a six page report.  

Despite not finding a diagnosis helpful from a medical standpoint, Sarah was able to find comfort in connecting with parents through Facebook.  She said, “That was the biggest thing for us, just knowing people who understood and who could help us know what to expect, what they had dealt with and what life was like with their children.”

Potocki-Shaffer Syndrome

This disorder affects the development of bones, nerve cells in the brain and other tissues.  Most people with Potocki-Shaffer syndrome have several noncancerous bone tumors. There is a wide spectrum of symptoms related to Potocki-Shaffer syndrome.  Most individuals have an intellectual disability, delayed speech, motor skills and social skills.

In addition to having Potocki-Shaffer syndrome, Betty also has a sensory processing disorder. More specifically, she has a hard time dealing with noise.  This makes everyday life very challenging.  

The Joy of Raising a Child with Disabilities

Sarah recognizes that there have been several challenges in raising Betty.  However, she also realizes the great joy and impact she has on her family. She said, “She has such a sweet personality and spirit, and we just love her.  She brings so much joy.”

At two or three months old, Betty’s pediatrician gave Sarah incredible advice.  He told her to not let Betty become just a stack of symptoms. Betty was their beautiful daughter and they needed to go home and love her.  Something Sarah said they have done and that she couldn’t imagine Betty any other way.

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Twins Boys Diagnosed With Two Different Disorders

Complications result in abortion advice

During her pregnancy, Bijan said, “I was having many complications.”  She explained that Jackson’s fluid was really high and that his umbilical cord wasn’t attached properly.  They were given two options; be put on bedrest and expect a very early delivery, or terminate baby B, Jackson, and continue the pregnancy with baby A.

“We both declined immediately, and they were born at 31-weeks gestation.  40 weeks is full-term, 37 for twins.” Bijan said. They also made the decision to decline any in utero testing.  

A lengthy hospital stay

When the twins were born, Jackson weighed one pound 14 ounces.  He ended up staying in the hospital for 90 days. Bijan said, “He has an underactive thyroid, but they didn’t figure out his thyroid condition for a while.  He was very listless, wasn’t eating properly and wasn’t gaining weight..they kept saying they knew it was a genetic condition but they didn’t know which one.”

They were visited by a couple of different geneticists who came by to try and figure out what Jackson had.  They ran a full-scale genetic test on him and were able to receive a diagnosis.

DiGeorge syndrome

When he was three-months-old, Jackson was diagnosed with 22q11.2 deletion or DiGeorge syndrome.  Meaning that he is missing a small part on his 22nd chromosome. The medical problems associated with this syndrome are: heart defects, poor immune system, cleft palate, difficulties in feeding and gaining weight, and delayed developmental milestones.

Jackson was lucky and escaped any heart related conditions. However, he has had several hospital stays due to surgeries and tests that have been run.

Reaction following diagnosis

“I think for a lot of people, you can’t really believe it at first.  You just expect everything to go perfectly like every parent would. The first day was just denial, I guess..but as the days went on, I grew a little more confident with trust and faith in the whole situation, and I knew it was going to be okay.” Zach shared.

Trying to stay positive and being a good support is something that Zach says has been challenging.  He said, “So you just want to be there for him, help him develop and try to be a good dad.” Bijan shared that for her, the challenges have come in watching him go through hard things as an infant.  She said, “In the beginning, it seemed like the cards were going to be stacked against him, and I think that was tough.”

Finding happiness in his success

Bijan shared that her biggest joy is seeing how far Jackson has come.  She shared, “He still isn’t the typical three year old, but our joys come from his successes and everything that he does do now..he does have such a great personality, and he’s such a great kid.  He’s happy 99.8% of the time, so he’s our whole family’s joy.”

Something Zach has found joy in is seeing Jackson smile and hearing him giggle.  He said, “You don’t know what’s going to happen, you never know. Just seeing him smile and looking you in the eye the first time was the biggest joy..I think the biggest joy thus far is his personality and his sense of humor.  That has been greater than I could ever really dreamed of, so we both have a lot to look forward to.”

Other son diagnosed with autism

Walker, Jackson’s brother, was recently diagnosed with autism.  Upon finding out that diagnosis Zach said, “It was a long stretch of almost three years.  I wasn’t really surprised, I couldn’t really be surprised at that point. All I could really think was, ‘Here we go, let’s just do it.’  We are already there for the boys, so all we can do is just do as much as we can and try to keep them happy.”

Bijan however, had a different reaction.  She said, “I felt like I had been hit with a MAC truck after everything.  That’s the truth, I just didn’t see it coming. But like he said, this is our life, and these are our boys and they are perfect to us.”

Take care of yourself

Looking back at the best thing she did for himself and her family, Bijan said, “Take care of yourself as parents..I was so young when I got pregnant, everything just felt like it was constantly coming at me and I was very overwhelmed.  One day I just looked up a therapist, and I went and had a session, and I went for a year. It was the best thing that I ever did for me and my children.”

Later she added, “Don’t live in the future.  You cannot control the future, so there is no point.  Enjoy your baby, and love him or her for who they are.”

Zach’s advice was simple, “I just just tell you to hang in there, and sometimes having a label is the worst way to look at it.”

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Choosing Life Despite a Fatal Diagnosis

Receiving an early diagnosis

Maria explained that due to her age, her doctors wanted to do cell DNA testing on her baby. At 10-weeks, she received the news that her baby had tested positive for Trisomy 18 or Edwards syndrome.  She asked, “What does this mean for my daughter?” 

She was told that this condition was incompatible with life.  Women would typically miscarry and if she was lucky to make it past 13-weeks then her baby would most likely be stillborn.  She was then told if she wanted to have more children in the future she would need to terminate the pregnancy.  

The fight was just beginning

Upon being asked to terminate her pregnancy, Maria started to question everything.  “What are the statistics as to how accurate your tests are? They said they were 98% accurate, and I said, ‘Okay, so there’s still a 2% change that you could be wrong.’  I questioned everything, the validity of the test, where did it come from and how long they been using it.”

Her doctors then wanted Maria to do an amniocentesis to confirm the diagnosis and to pinpoint more what organ would be affected.  Maria didn’t want to risk going into preterm labor so she declined. However, for months and months Maria said she was asked to do an amniocentesis.  Finally she said, “Enough. I’m not doing that to my daughter. She has a beating heart and as long as that heart is beating my answer is no.”  

She knew that her fight was just beginning.

Moving to find better healthcare

In the state where Maria lives, she explained there is no major medical ward or a NICU.  When she would ask questions to what level of care her daughter and she would receive, they were never full of hope.  If Serenity was in distress, they wouldn’t perform a C-section, they said they would let nature run its course.

Wanting to give her baby every chance possible, Maria found doctors who were willing to help fight for Serenity.   She said the responses she received from her doctors gave her reasons to “get out of this town and go somewhere else, fight somewhere else.”  

Advocating for your child

Despite being discouraged by her doctors, Maria decided to take matters into her own hands.  She said, “I found out at 10 weeks then I was 12 weeks, and I wasn’t getting anything positive, so I started making my own phone calls to doctors’ offices and insurance companies.”  

After many phone calls she was able to find a doctor who agreed to help her.  She said, “It has been awesome here, because this is where they are willing to fight for her.  This is where the doctors were willing to open doors for me.”

Fear and hope

Maria said that her biggest fear is that someone will make a medical decision for her that she doesn’t agree with.  She said, “I may make the wrong decision. I ask God daily to please give me clarity..if it comes down to the point where she’s just not thriving and is suffering, that I would know when to say enough is enough and to let me daughter go if that’s what it comes down to.”

All Maria hopes for is time with her daughter.  She hopes that she will be given a miracle and be able to see her.  “I’m aware that I may only get 15 minutes. I’m aware that it may be an hour, days, maybe weeks.”

Advice: Don’t stop fighting

“No disrespect to the medical community, however, they are medical practitioners, they are not God, and my God tells me that He has the final say.  I would say just fight no matter what.” Maria said.  

She added that if you feel like you aren’t getting the answers you want for your child to keep fighting.  She said, “..then you make another phone call. If they don’t pick up, you make another phone call, and if they don’t pick up or don’t call back, call back again…do whatever you have to do to get somebody else to take a look at those test results.”

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Defying Medical Odds

Meeting with a geneticist

At their 20-week ultrasound Kristin and Chris were excited to find out the gender of their baby.  Looking back on the experience, Kristin realizes how rushed and odd the technician seemed. At the time, she didn’t think too much about it because she was just excited to find out their baby was a boy.

A few days later, they received a call asking them to come meet with a geneticist.  Kristin was curious why so she asked, “Is this something everybody does or is this just something that we’ve been chosen to do for some reason?”  Unfortunately, they wouldn’t give her any answers over the phone. They were out of town during that phone call and had to make the grueling three hour drive home, worrying the entire way.

“The next morning the doctor sat us down and told us that they noticed a lot of abnormalities with our baby in the ultrasound. One of the things they noticed was that his brain was missing the cerebellar vermis, so the back of his brain just wasn’t formed; it just wasn’t there.  They also noticed his heart didn’t look normal.” Kristin said.  

Not knowing the diagnosis until he was born

Even though Kristin and Chris had met with multiple specialists to try and determine what Ethan’s diagnosis was, they were unsure.  Specialists speculated that it was some sort of chromosome abnormality. Kristin and Chris were asked several times if they wanted to continue with the pregnancy.

Kristin shared, “They kept asking us if we were sure this is something we were ready for. I think that’s a silly question, because I don’t think you’re ever ready for that, but we knew that we didn’t want to take any chances with him because we knew we wanted him.” 

They were offered an amniocentesis but declined due to the increased risk of preterm labor.  Kristin figured that they could do the same test after he was born and receive the same results without an increased risk to Ethan.  

Full Trisomy 9

There are many documented cases of babies being born alive with partial or mosaic Trisomy 9.  However, Ethan is one of the only cases who had full Trisomy 9 and was born alive. Kristin and Chris were told that most babies with full Trisomy 9 miscarry early on.  Ethan defied medical odds making it to term.

When someone has Trisomy 9, they have three copies of their 9th chromosome.  Aside from Trisomy 9, he was also diagnosed in utero with hydrocephalus. 

Thoughts surrounding a diagnosis

Chris shared what he first thought about finding out Ethan was going to be born with some abnormalities.  He found that there were many people who shared a similar experience. They were told their baby had abnormalities and when they were born, they were perfectly healthy.  Chris was hoping that this was the situation, he wanted the doctors to be wrong.

“I think i was a little more calm than she was.  She was crying a lot, and that’s fine and natural.  It wasn’t until I started reading more about suffering in this life and the things we go through while knowing that it’s for a reason that started me crying as well..it’s for a purpose, and there is joy in it.  Which sounds crazy, but there can be joy in suffering.” Chris added.

Ethan lived for 93 minutes

Describing their birth experience as “happening really fast” Ethan was born via an emergency C-section.  Not being able to first initially interact with Ethan, Kristin prayed that he wouldn’t die so she could meet him.  The doctor who performed the C-section said, “I’m really sorry, but there is nothing that we can do.”  

Kristin was filled with fear, thinking Ethan already had passed.  In the whirlwind of a delivery she said her brain was foggy trying to process the events that just happened.  As soon as she held Ethan, all of that fear disappeared.  

Kristin said, “It wasn’t just the physical pain of having labored him, it was also the all the emotional pain and all of the mental pain and just all the different types of pain that we had gone through in the weeks leading up to his birth, it was like i forgot about it all the first time I saw him, because he was perfect.”

Not seeing his abnormalities

By all accounts, in the eyes of the medical staff, Ethan was born with abnormalities.  Kristin and Chris saw none of that. “..you just see this perfect little thing who has his dad’s hair and my nose and all those little things that you see when you look at him.  As much as the moments leading up to his birth and right after he was born were filled with so much fear, it all just went away the moment I saw him.” said Kristin.

Legacy of Ethan

Chris said that the impact Ethan had on their family was felt far and wide.  They had a beautiful funeral service for him. There were nearly 400 people that attended.  Chris thought, “Man, I hope that I can leave the type of legacy that he left and the type of impact that he had.”  

It brought their family, friends and community closer together.  People they never expected to show up to his funeral did. “We are thankful that through his life and his death, we were able to share his story with those people.”

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