Our congenital heart defect story: Part 2

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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. 

As a parent, there are moments in your life that will always stand out clearly. I remember the day we found out we were pregnant with our last child – our fourth. Our biggest concerns were what we should name him and how will his personality mesh with our three older children? How will we manage four children? The prenatal appointments all fit into place; easy and nothing abnormal, yet still special in their own way. When Hayes was born via C-section and I was able to see him brought out, he had two knots in his umbilical cord and all I could think was “wow, we really dodged a bullet.” The doctor commented on how rare it was and I was relieved that there were no complications due to those double knots. We all breathed a sigh of relief and focused on enjoying our new baby.  

As a parent, it is incumbent upon you to take care of that baby once he is brought into the world. Everything is tasked on you to make sure his safety and welfare are taken care of. I remember sleeping on a chair in the hospital room, eager to change every diaper and pull my fair share of child duty while my wife rested and recuperated. I woke up off and on, but it was no big deal because everything was normal for a newborn. It’s such a mixed feeling of exhaustion and pure joy that a new baby brings. I remember the moment Sommer tapped me out to give me relief, get something to eat, take a shower and spend time with the other kids so other family members could come see the baby. I drove the few blocks home, took a short nap and played with the other kids, trying to doze off.

As I was dozing off I got a phone call from Sommer. I expected it to be a routine request, but instead heard panic in her voice. “Get back to the hospital as soon as possible. Something is wrong with the baby. Hurry back!” It is odd how some of the details are crystal clear and others fade away, but I remember thousands of thoughts and concerns in my head. Is it possible my wife could be exaggerating? Everything was fine when I left. She must be mistaken.

I went back to the hospital and went directly into the Neonatal Intensive Care Unit (NICU) with uncertainty, but thought it was something simple. I spoke with the doctors and nurses and they were very attentive and patient trying to explain what was happening while tending to Hayes. It hit me like a ton of bricks and a cloud of uncertainty dropped around me. Transposition of the Great Arteries (TGA) was his presumed diagnosis. His vitals and oxygen levels were dropping into frightening territory while the doctors worked to stabilize him. I was going to have to go explain this to my wife.

I had to try and convey the message with only a photocopy the doctors gave me and regurgitate what was explained to me. In disbelief, I tried to explain to my wife what was happening with Hayes and that we had a huge, life-altering decision to make about where to take our child for a treatment and surgery we still didn’t understand. As a parent you want to research and make the best informed decision for your child. Fortunately for us, with minimal research, the answer was clear. The place to take Hayes was Texas Children’s Hospital. I wheeled Sommer down to see Hayes and then suddenly Texas Children’s Kangaroo Crew arrived and it was time to go. I left my wife in a wheelchair in the hallway and went with Hayes and the Kangaroo Crew to Texas Children’s. Sommer was going to check herself out of the hospital 24 hours after C-section so that she could be with Hayes.

Hayes was rushed to the NICU and assessed by a team of medical professionals. Within minutes, the team had conferred and agreed on the best course of treatment. They explained to my wife and me in a way that made us feel informed and part of the treatment process. Every question we asked was clearly and calmly answered. During a time filled with uncertainties, that patience, compassion and understanding reassured us that we made the right decision in choosing Texas Children’s. After going over the details of the emergent needs, Hayes had a procedure to stabilize his oxygen levels and buy us some time until he had to have open heart surgery. He was transferred to the CVICU pending and an arterial switch within the next two weeks.

Over those next two weeks, my wife and I were insistent on being by Hayes’ side as much as possible. It seemed like everything had been thought out for us and it made our experience so much easier to deal with. From where can my wife pump and store milk, to where can I grab a bite to eat, to where can we shower and nap for a while, there was a solution for it all. I am forever grateful to everyone at Texas Children’s. They all performed at a level of excellence while maintaining compassion and concern for the entire family. They will always hold a place dear in my heart.

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About J, father of patient

My fourth child, Hayes, was born with Transposition of the great arteries. He was immediately transferred to Texas Children's and they saved his life.
Posted in Heart, Patient post, Surgery

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