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! 🙂

 

Transposition of the great arteries: our baby’s story 1 of 2

One year ago today was the happiest, scariest day of my life – the day our wonderful baby Ryan was born.  While I was still about 5 months pregnant, we found out our still unborn baby had a critical, fatal (but fixable) heart defect called TGA or “Transposition of the Great Arteries.” Out of concern for our baby’s privacy, I’ve not written about him or used his photos in any public websites. That said, after months of soul searching, I can’t forget the hope a selfless mother’s blog about her family’s experience with her son’s TGA gave me. And I want to give other mothers the same hope I got. So, just this once I’m going to write about our experience with him during the past year.

This healthy kid was born with TGAI was 40 when I got pregnant. After years of fearing not meeting the right man in time, thinking I might be too old to get pregnant once I did (I was 37 when we got married), and multiple disappointments, suddenly without any outside intervention we were pregnant. The emotion was overwhelming: joy, gratitude and anticipation. When I was about 5 months pregnant we went into my obstetrician’s office for a routine ultrasound. While administering the test. after initially chatting and exhibiting her southern charm the technician suddenly grew silent. She kept looking at the blood flow (it’s color coded now, pretty amazing) around the heart, pushing so hard on my stomach it actually started to hurt. Next we were ushered into a normal examination room where a young doctor (ours was out delivering babies) came into the room and gave us the news: she thought our baby had a heart defect. I think she even named it. And we needed to go see a specialist at UCSD who had a better machine for a diagnosis. At that point we were terrified/in denial. I think we asked some questions but mainly felt stunned. How could we have waited so long for this baby to have an outcome like this?

After getting the TGA diagnosis confirmed we also learned I would have to deliver at a different hospital, one attached to the Children’s hospital because Ryan would almost certainly need immediate surgery after being born. Even though knowing about his diagnosis so far ahead of his birth was painful, it gave us the luxury of choices we wouldn’t otherwise have had: I chose a perinatologist for myself, plus Ryan’s cardiologist and heart surgeon before he was born. We considered flying up to my home town of Palo Alto if Stanford would have given us a better outcome but after researching and interviewing the the doctors closer to home, decided our options in San Diego were good. The heart surgeon we picked, Dr. Lamberti, had extensive experience, including a stint at Stanford. We were also able to work with the head of Cardiology at Rady’s, Dr. Moore. Usually normal people do not welcome the kind of grilling you learn to do at Intuit to get to root cause (we learn to ask five levels of “why”) but these docs not only answered all my questions, they did so with kindness and calm confidence you want to see from a person who is going to cut your baby open, stop his heart and start it again.

Up next: his birth