Transposition of the great arteries: our baby’s story 2 of 2

This post contains the information I was most anxious about before Ryan’s birth, so I’m going to get pretty detailed in the hopes it helps other anxious parents.

This cute baby had transposition of the great arteries when he was bornWhen you know your baby will need surgery immediately after birth, you want to set a schedule as much as you can so you can get the “A” team, not whomever is on call in the middle of the night when you go into labor. Also for the safety of the baby we learned you want to go as close to exactly term as possible, but not longer. On May 27th (a few days short of being full term), 2011 we officially gave up on being induced (it didn’t work) and scheduled a C section for the next day. There were probably 7-8 nurses/doctors in my surgery room connected to another surgery room with another team ready for Ryan. There was a little hole cut in between, like a McDonald’s drive-through.

During the actual event Matt stood next to my head. As soon as Ryan was born they passed him to the next room. I’m quite sure they gave me some sort of valium-related drug bc I was pretty drowsy. In fact, I wouldn’t have seen Ryan at all after he was born if my husband hadn’t called my name from the little drive through window. I was so out of it I didn’t even realize he moved from my left side to the other side of the room with the baby. The sight was a relief: he was pink (babies with TGA can sometimes be born blue) and perfect looking. I never got to hold him, which still makes me sad. Still, I don’t regret the decision to get him to the cardiologist as fast as possible.

This next part I learned second hand from my husband, since I immediately went to post-surgery where I was joined by my angel of a mother who stayed with me for many hours.

Once with the cardiologist, they do an immediate diagnostic to determine what his oxygenation levels are, how his heart is working, etc. Since his defect meant no oxygenated blood would move through his body, oxygen is a big deal. Before babies are born and right after (for some) they have a little hole in between the chambers of their heart so the mother’s heart can do the work. The hole closes up either right before or right after the baby is born. In our baby, we wanted that hole to stay open until major surgery, so oxygenated blood could flow through his body. Once he was born, his cardiologist quickly determined he needed to have the hold re-opened, so they used a scope to open it back up. Medication kept it open until his major heart surgery. To get him to this initial surgery, the team walk/ran our baby from the Women’s hospital through the maze of tunnels to Rady’s Children’s hospital where they did the scoping surgery. He did well – this surgery was minor compared to what was to come.

The first time I touched him was in the NICU in the heart wing at Rady’s- an amazing place. After a week’s stay there in his own room with a host of incredible nurses he had his major heart surgery one week after he was born. The hours of waiting to hear were some of the most traumatic and blurred of my life. Finally his surgeon emerged and told us the surgery went picture perfect. We were hugely relieved – I think maybe I cried.

A few weeks later, Ryan came home. I think he was maybe in the hospital around 3 weeks. Shortly after he came home we realized something wasn’t right and within a few days he was readmitted. It turned out to be nothing serious – he had a really tough case of gastric reflux, which most heart babies do, evidently. When he came home the second time (he was only in the hospital a few days that time) we came home to stay at my in-law’s house for several weeks until we could establish a routine of sorts.

Looking back, this stuff both seems both so far away and still feels so immediate. Our little guy is 1 now – his cardiologist has said he only has to come back once a year for a checkup. Although he’s doing well, there are a few side effects that can occur over time.

I was blessed during this process – wonderful husband, wonderful parents, wonderful baby, wonderful friends. People came out of the woodwork to support me. On one particularly dark and fearful moment my boss/friend told me she KNEW everything was going to be just fine. She knew down in her bones. Let me tell you, if you are looking for the right words to say – those are the right words. It gave me something to cling to.

And now? We have a happy, healthy baby boy. If you’re reading this because your baby (or future baby) has TGA he or she will be too. Do as my MIL told me: be strong, mommies! 🙂

 

12 thoughts on “Transposition of the great arteries: our baby’s story 2 of 2

  1. Thank you for your story we are due May 26th 2013. Our baby has the same diagnosis and I pray he will be just as strong as your little one.

  2. Natasha! Thank you so much for your comment. If I could hug you right now I would. He will. I know this is such a hard time but he will. And you will get through it too.

  3. Thank you for your story of inspiration. Our little one is due in one month and we are going through the exact same thing.

  4. Thanks so much for this blog. Found out today our little boy has same. Am 5 mths pregnant so hoping that your outcome is ours. Thanks for sharing.

  5. Hi dear, my son was born with the same condition, he did his operation and thriving really well now( currently 40th day old). how’s your little one now? im worried about their growing up stage… hopefully they will grow up healthily just like every normal kids.

  6. Thank you for sharing your story. My little brother was also born with this condition, and today he is 24 years old and doing great. He did eventually have to have another open heart surgery to replace a valve but that also went well and he’s already a year and a half post op.

  7. Thank you for writing this. We just got this diagnosis today- at 19 weeks and I feel so alone and hopeless. I found your story by doing a Google search and so glad I did. I live in the Bay Area so I’m thankful we’ll be at Stanford. I suppose we will learn more as the days go on, but right now we feel beyond devastated. Thank you for sharing.

  8. Melissa, I’m doing the math… did you have your baby yet? I am a Palo Alto native and we considered flying home to have the baby at Stanford. They are the best! Our kid is now five and going strong- no other issues. Reading your comment choked me up- I remember exactly how that feels. It is very scary but you will get through it.

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