Our congenital heart defect story
Every Friday during National Congenital Heart Defects Awareness Month each member of Hayes’ family will share their story and how they have been impacted by his diagnosis.
My fourth baby. 36-years-old and having my FOURTH baby! Hayes was a planned pregnancy, but I didn’t quite plan on feeling so nervous about managing four kids or feeling so OLD every time my chart was marked ‘Advanced Maternal Age’…ouch. But here we were and I was going to rock it this time. How hard could it be? Having a fourth newborn would be a cinch!
I had a planned cesarean section (C-section), family was in town to watch the other children and I was looking forward to a relaxing weekend away with nothing to do but focus on bonding and caring for my last little bundle of joy.
My pregnancy was unremarkable; the baby looked great and things were all falling into place. As C-section day arrived I started feeling more confident and more at peace with the idea of four kids. My mother-in-law came into town, as did my sister-in-law and her twin two-year-olds. We were headed to the hospital, leaving three two-year-olds, an eight-year-old and an 11-year-old. I was definitely looking forward to the break from that chaos!
My perfect baby boy was born 9 lb. 1 oz. and 20.5 inches, with two true knots in his umbilical cord, but otherwise ‘perfectly healthy,’ according to the doctors, nurses, pediatricians and other staff. I cried with relief and joy and snuggled that perfect baby into my chest and drank in every moment, knowing he was my last. Little did I know, we would end up at Texas Children’s not even 20 hour later.
We transitioned seamlessly into our room and I never put my precious Hayes down. He took easily to the breast and settled in. I remarked to my nurse that his feet looked a little purple and rough. “Fruit leather” was the term I used to describe them. She assured me that all C-section babies looked that way, but I argued back a bit, pointing out that all four of mine had been C-section and I never remember seeing purple feet. She again assured me that it was okay and he was fine. People visited and we all ooohhh’d and ahhhhh'd over my sweet new baby, but every visitor commented on his coloring. We all thought he was just a bit off somehow – a bit pale and a bit purple. Every medical professional who came in said he was fine. They wanted to take him to test his blood sugar because he was over 9 lb. (like all of the others). I argued just a bit, but I was exhausted from the no sleep and early morning, so they took him to run different tests. All results were normal. As he nursed following the heel pricks, he started to bubble a bit from the mouth. Again, I was told it was ‘normal’ for C-section babies, but I had never seen one of mine do something like that. At this point he was pale and starting to have mottled-looking skin. The doctors came to get him for his circumcision, so I decided to send my husband home to check on the other kids and grab a quick nap since I was going on several hours of no sleep. Everything seemed great and the medical professionals had assured me all was fine with my baby. I awoke from a short nap to my nurse standing beside my bed, but my baby was not with her.
This next part is somewhat jumbled in the fog of how surreal it all was. I tried to listen to the words she was saying. Nothing was making sense. She noticed that Hayes’ coloring was questionable so she took it upon herself to detour to the neonatal intensive care unit (NICU) to have him checked out. A neonatologist appeared in my room and said something along the lines of “it may be his heart, but maybe not” and quickly left. So many thoughts were running through my head. Heart? Maybe? What?
I sat there stunned, afraid and alone. I called my husband to come back to the hospital, but had no details to give him. “They say something might be wrong with the baby,” I told him. I sat in my room for what seemed like an eternity awaiting any news. My husband came in with some handouts and still no baby. I was crying and trying so hard to become an expert in something I had never heard of. Congenital Heart Defect? TranspoTGA? What? My brain was not understanding any of it. “Open heart surgery.” “Transport.” “Oxygen not circulating.” “Emergent.” I stared blankly at first. Then there was a drawing thrust in front of me of what a heart should look like and what my son’s heart apparently looked like. I tried to muddle through the drawings and paperwork and tasked my brain to make sense out of what I was hearing and seeing. “Transposition of the great arteries,” they said. I stared pleadingly at my husband as if he were suddenly a heart expert and asked again for him to explain. Again and again, he went over what little it was he knew and what amazing amount he taught himself in the five minute walk to my room. I learned that TGA is when the two major vessels that carry blood away from the heart, the aorta and the pulmonary artery, are switched.
I was 20 hours out of surgery, but demanded to see my baby boy so it would make sense in my mind. I had to see him and touch him. My husband wheeled me down to the NICU floor and I sobbed as I struggled to understand just what was happening. My precious perfect baby was under a tent and had lines coming out of his head. I didn’t even hear the words the doctors said as I sobbed uncontrollably. The doctor tried to convince me to send Hayes to another hospital, but I was set on him going to Texas Children’s. One of my childhood best friends, Matt, now worked for Texas Children’s, and in cardiology no less! I wasn’t sure exactly what he did, but I texted him immediately. He wasn’t even in Texas at the time, but he assured me that Texas Children’s would take care of my baby boy. He told me about the Kangaroo Crew and said they would take care of the transfer. I am honestly not even sure what happened or how, but the amazing Kangaroo Crew was at the hospital lightning fast and brought Hayes up to my room to say goodbye before departing for Texas Children’s. It was a large crew and they were so compassionate and so caring and some even had tears in their eyes as I cried and said goodbye to my baby, so uncertain of what was to come. My husband went with them to Texas Children’s and I was wheeled behind them until the moment they walked out the doors. I will never forget a kind woman touching my arm and telling me she would pray for me and my baby. A stranger taking the time to tell me that she cared; it is a moment I will remember forever. I sat helplessly waiting for my ride to follow Hayes to Texas Children’s.
I arrived at Texas Children’s with my pajamas, no shoes and a breast pump. I connected with my husband and he briefed me on our son’s progress and prognosis. The rest of the details are also a blur, but they took amazing care of us and saved my son’s life.
Hayes is now two-and-a-half-years-old and never stops. Skinned knees, bruises, dirt and boy mess are now part of our every day. A thin scar down his chest and a few H-shaped scars on his belly are all that remain from his ‘exciting’ entrance into this world. I am forever thankful to my nurse who took that NICU detour, my friend Matt for holding my hand through all of the uncertainty, my husband for being my absolute rock and Texas Children’s for the incredible care they took of us.