At her 20-week ultrasound appointment, Summer received some life-changing news.  She remembers the ultrasound tech being very thorough when going over baby Aires’ neck and head.  When the technician finished, she left saying the doctor would be right in.  “The doctor came in and his eyes were full of tears,” Summer said.  The images showed Aires was missing parts of his brain because he had Anencephaly.

Parents Decided to Carry Baby with Anencephaly to Term

Summer and her husband immediately went to see a neonatal specialist.  He confirmed the diagnosis and brought them into his office to discuss their options.  “My husband was trying to figure out what we could do to fix it,” Summer said.  He was hoping there was surgery or some kind of treatment that could be done.  Unfortunately, that is not the case with anencephaly.

The doctor gave them the option to go to the hospital, induce Summer, and begin to move on from this diagnosis but that didn’t feel right to Summer.  “I remember I didn’t feel like I was speaking for myself because without even thinking I said, “No, we will carry to full-term,” Summer said.  She also asked the specialist about organ donation and if that was possible, which it was.  Summer believes Aires wanted to be a donor from the very beginning.  “He wanted to give all he could in his short amount of time,” Summer said.

There are Ways to Bond with Baby with Fatal Diagnosis

This pregnancy was very different from Summer’s previous two pregnancies.  For example, she was very nauseous and sick until 26-27 weeks gestation.  “I’m sure he did not want me to forget him,” Summer said.  Her body was also over-producing amniotic fluid, as is common with babies who have been diagnosed with anencephaly.  So Aires had lots of room to do flips, punch, and toss and turn.  Towards the end of the pregnancy, Summer was put on bed rest.  This provided additional opportunities for her to sit, ponder, and bond with Aires.

“The day of his birth was literally just a piece of heaven,” Summer said.  Summer and her husband had months to prepare for this day and everything came together wonderfully for them.  Aires was born via c-section in hopes of ensuring more time with him.  She hadn’t had a c-section before but Summer remembers feeling relaxed and excited to meet him.

Aires was intubated immediately after being born.  Intubation would help with donating as many organs as possible.  Several family members were there to meet Aires and spend a little bit of time with him as well.  After an hour, Summer and her husband decided to pull the tube.  They excused their families because they figured Aires would pass away soon. However, a few hours went by and Aires was still holding on.  One-by-one every family member came into the room to give Aires one last kiss.  It was only after everyone came back into the room that Aires took his last breath. “It was just so beautiful that he did that for us because we all needed that time with him,” Summer said.

Child Leaves Lasting Impact Despite a Short Life

Aires was able to donate his lungs, pancreas, corneas, and heart valves.  The heart valves went directly to another baby while the other three organs were immediately used for research purposes.  “He knew that his organs were needed,” Summer said.

Aires’ life touched everyone in his family.  The adults learned how to live in the moment and keep family close.  Summer has had conversations with her other two children about death and the afterlife that she wouldn’t have had otherwise.  “Their insight is way beyond their years and it’s been comforting,” Summer said.

Mother Gives Profound Advice After Baby with Anencephaly Passes

“If anyone gets the opportunity to have a baby that passes or maybe lives with a disability, it is worth the sacrifice and the heartache because you will have way more loving, beautiful, happy days than you will have dark ones,” Summer said.  Summer knows the grieving process is real.  It is important to get to a place of acceptance and peace when your child has a fatal disorder.  To do that, you must grieve.

Summer was able to bond with her baby inside and outside the womb and she continues to bond with him spiritually every day.  She makes a point to document her thoughts and feelings because she never wants to forget the impact he made on her life.  “I want to feel sad over his loss, but I also want to feel happy over the gain of the angel I have following me all the time,” Summer said.

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