Told Her Child Is “Incompatible With Life” – Mother Chooses Hope

 

“Trisomy 18, also known as Edwards Syndrome is a genetic disorder caused by the presence of all or part of an extra 18th chromosome. The majority of people with the syndrome die during the fetal stage; infants who survive experience serious defects and live for extremely short periods of time. This is associated with a broad spectrum of abnormalities which consist of greater than 130 discrete defects involving the brain, heart, craniofacial structures, kidneys, and stomach. Edwards Syndrome has no treatment and is usually fatal before birth or within the first year of life.”

I read these words as I waited in the maternal-fetal office. At just 23 years old, and 20 weeks pregnant, I had been referred to get a more in-depth ultrasound when my sonographer couldn’t see all of my daughter’s heart and noticed choroid plexus cysts on the brain. As I sat there, I googled “choroid plexus cysts.” Google always knows, right? These often were not indicators of anything, but at times were a soft marker for Trisomy 18. For some reason, this resonated with my heart. A genetic condition that I knew absolutely nothing about 10 minutes prior. The next several hours felt like a nightmare. I went back into the imaging room as the new sonographer scanned over my belly. She did this for two hours. She didn’t say a word. Finally, the doctor came in and asked if we had any idea what was going on. I said no.

He proceeded to say, “Basically, everything is wrong with this child. There are cysts on the brain, the fetus is missing half of its heart. There is a hypoplastic left ventricle. Clenched fists. The fetus is about 4 weeks behind on growth already and has severe intrauterine growth restriction. I see a cleft palate.” He paused for what felt like an eternity and then said, “Oh, and there are two clubbed feet. And it’s a girl.”

The doctor said I needed an amniocentesis to confirm, and that if it was indeed Trisomy 18, as he believed, I couldn’t continue my pregnancy. “She is incompatible with life. She won’t survive. I don’t think you understand how serious this is.”

We went forward with the amino, after a false preliminary result came back claiming Evelyn had Down Syndrome (Trisomy 21), we received a phone call a week later saying the lab director had made a mistake. Evelyn had Trisomy 18, not Trisomy 21. The doctor proceeded to say, “I spoke with your OBGYN already, and he told me that you will be terminating. He has that scheduled for you.” I couldn’t believe what I heard. Not only had I made it clear that was not an option, the doctor’s name spoken was one I had never heard before. I had no idea he was even a part of this practice. I instantly told the doctor I wouldn’t be doing that. Again, he said, “I don’t think you understand this. She is incompatible with life. This is fatal. She will not survive.”

I was immediately dropped from the practice after calling through screams and sobs to ask where in the world that information came from and that I would continue my pregnancy. I went 5 weeks without a provider. Tragically, it was a thousand times easier to schedule an abortion for my child than it was to find proper care for myself and my pregnancy.

Finally, I found a practice. And my Evelyn Grace continued to live. I knew inside my womb was the safest place for Evelyn to be. I lived my pregnancy knowing simply that I was not the one that created my daughter’s heartbeat and I didn’t have the authority to decide when it ended. Although Evelyn existed inside of my womb during this time, her story and her life were uniquely her own. I was simply given the beautiful gift of stewarding that. And so Evelyn stayed put. And she grew. She made it to 39 weeks when I was induced, giving my team the order that Evelyn would receive full intervention after birth, just like any other critical newborn would.

Evelyn spent several weeks in Intensive Care before we went home. I spent this time and the time during my pregnancy learning and equipping myself to be the best mom and advocate for Evelyn.  I learned that a Trisomy condition, having three copies of any specific chromosome, is not a death sentence. Yes, there can be many health concerns that may come as a result of the third chromosome, but when these concerns are treated, these children will thrive.

I saw the strength and resilience of mothers ahead of me and their children in the Trisomy 21, 18, and 13 community. Through life in and out of the hospital, adapting to the medical equipment, and learning all about Evelyn’s care, my family and I have experienced more joy and love than we knew possible. I wish I could go back to myself that day in the office and say, “You have no idea what joy is ahead. Yes, this will be hard. And there will be valleys of despair and moments where this all seems too much. But you will see strength and love in yourself and in Evelyn that you didn’t know existed. The view you are about to have will take your breath away. Just keep going.”

The only tragedy here would be never meeting Evelyn. All of our days are limited. Not just a child with a chronic illness. None of us are promised tomorrow. I remind myself daily that on my best day or worst day caring for Evelyn, I never have the power to add or subtract a day from her life.

Only the author of life does. That frees me up to just be Evelyn’s mom. I don’t worry about her days ahead. I pray for wisdom for myself and her medical providers and leave the rest to God. I look forward to each day ahead with joy. Evelyn has truly changed our hearts from the inside out. Evelyn is now 2 ½ years old. She is a big sister to Esme, and a blessing to all she comes across. She daily changes the mind and hearts of those in the medical field we come across, and she is paving the way for others just like her. I will always choose life. I will always stand in the gap for those who are marginalized. Each life, no matter how long or short is precious and sacred. Every life has a purpose.

 

 

 

— Hannah Sudlow is first and foremost a Christ Follower, wife to Craig, and mom to Evelyn and Esme. She is also the Executive Director and Co-Founder of Evelyn’s Treehouse, inspired by her daughter, Evelyn. Their mission is to come alongside new families in the hospital who have received a life-changing medical diagnosis for their child by offering support and resources. Their goal is to help empower and equip parents to confidently live out their new role of caring for their medically complex child. Hannah is an advocate for the special needs community and those who are marginalized in their health care. Ultimately, Hannah shares Evelyn’s story to encourage others to see the value and sanctity in each and every life and help normalize special needs.