A’moura’s Story
Written by: Narleys Cortes
May 6th, 2021 was the day I found out about my daughter’s omphalocele. It was my first ultrasound appointment; I was 11 weeks pregnant. Everyone greeted me with big warm smiles and made friendly conversation up until my OBGYN started conducting the ultrasound. It got so quiet and I felt the room get cold, I knew something was wrong. I was told about her omphalocele, a rare condition where the abdominal organs get stuck in the umbilical cord forming a sac outside of the belly through the belly button. Still, no one had much knowledge at all about this defect.
For a while after hearing your unborn baby's diagnosis, you will feel so many things and have a war in your mind. You are traveling unknown waters, thinking you are alone. A Google search doesn’t help because there's not enough information, so you’re still left overwhelmed and guilty. I know it’s easy to blame yourself when there’s no one or nothing else to blame, but the truth is that the cause is unknown. You did nothing to harm your baby, but that answer is not enough. It still leaves a void in your heart, so how do you accept what’s happening and move on?
I was referred to an MFM specialist and was told A’moura's “O” was giant (containing stomach, liver and intestines) putting emphasis on the fact that this defect usually goes hand in hand with other chromosomal abnormalities, I still did not opt for an amniocentesis. This procedure is done to check for chromosomal defects, gender, etc. but you risk having a miscarriage. I was going to love my baby no matter what so I found no need for that test and didn’t want to harm her in any way. She hinted to terminate, a decision I was very strongly against. She is here and wants to fight, who am I to terminate when this child very clearly wants to live? God is the only one who can make that decision for me.
Up until I was about 20 weeks pregnant my daughter had an isolated “O”. Meaning no other abnormalities coexisted with her Omphalocele. My MFM referred me to a pediatric cardiologist for an echo ultrasound. It was then A’moura was diagnosed with “Agenesis of Ductus Venosus with IVC dilation and right atrium dilation.” Whew, big words. This means that the shunt that allows me to give a balanced amount of blood to my daughter was missing (ADV) and she was receiving too much of my blood causing her heart to be “enlarged” (IVC and right atrium dilation). After finding this out I was seeing cardiology every 2 weeks.
My whole world came crashing down when I was 24 weeks pregnant, my MFM found out my daughter had Hydrops. This condition is when fluid builds up in multiple places in the body and nearly half of babies diagnosed do not survive. I was told by my MFM my daughter's heart can fail if fluid builds up in 2 places. In my case A’moura only had fluid buildup in the liver, so I was being closely monitored. Her condition didn’t improve after some time so I was given a dose of steroids to mature her lungs because I was told I had to deliver at 28 weeks and she will most likely pass away after birth.
I felt like I failed my daughter, I was so sad I couldn’t enjoy my pregnancy. I didn’t want a baby shower. I thought “If she isn’t going to survive, why celebrate? Why have these painful memories?” I was given Palliative Care during this time for emotional support. This journey can get very lonely and scary, especially when doctors can’t give you the information you need because they don’t really know themselves until the baby is born.
I was desperate for answers, I needed some kind of reassurance that my baby would be okay. I never thought in a million years I would be going through this. I came across an Omphalocele website that was no longer running, but it had a link to a Facebook group called “MOO – Mothers of Omphaloceles.” When I go to this group it says over 40 people write something in a day, with 4.8k members. Everyone is supportive and active. I thought, “I finally found people who can resonate with me. I finally don’t feel so alone.” Finding this group felt like coming up for fresh air when you have been drowning for too long.
By Gods faithfulness, my daughters Hydrops resolved on their own and she was able to make a home out of me until I was 35 weeks pregnant. On October 20th 2021, three days after my birthday, I delivered my daughter via emergency C-section. I went in for a regular follow-up ultrasound appointment and was told I had to deliver early because the ultrasound kept reading that A’moura was 3lbs. My MFM was worried because she was the same weight 2 weeks prior, meaning she hadn’t grown. That same night my baby girl was welcomed by her Mama and Papa.
We had a 3-month long NICU stay that is now just a memory. She was on CPAP for one day, then on a nasal cannula for 2 months because the “O” caused her to have underdeveloped lungs. With medication she improved and graduated to room air. She had and still has a feeding tube (NG) because she has difficulty finishing a bottle due to bad reflux that is very common in “O” babes. However, her Omphalocele has gotten significantly smaller! Her surgery will be when she’s 1-2 years old, depending on how she grows, and she has no more heart defects except for ASD (hole in the heart). Her previous heart conditions were only life threatening in the womb because of the missing shunt. Her cardiologist told me that her congenital defects would improve once she’s born, and they have definitely improved significantly.
Today my girl is as happy as can be. Slowly improving, but progress is progress no matter how small. Her Omphalocele makes her special, strong, and a warrior. All of our “O” babies will have scars that tell beautiful and hard stories. Always remember that even in your loneliest hour, even if you only have a mustard seed of faith, hold onto it fiercely. This is how you accept everything; this is how you heal. Remind yourself that your baby is strong, and you will see the good side very soon. Doctors will always paint a dark picture to prepare you for the worst. Listen, but don’t ever believe in them. Believe in God, believe that he is faithful to you and that he is protecting your baby.
In this unknown journey, also know that you aren’t alone. There's a whole army of parents that share their story and help you navigate through this. My Grandma once told me “God gives special babies to special parents and you are both very special to him.” I hope that resonates with you as deeply as it did with me. You were chosen to be their parent for a reason, so always trust that you are the perfect parent for your baby. I’m so grateful for my daughter and I wouldn’t trade my experience or journey for the world, these babies are resilient.
When that beautiful day comes when your child meets this world, whenever that may be, know that angels will sing.