Continuing my posts for Congenital Heart Defect Awareness Week, let’s talk a little bit about pregnancy. I hope that all pregnant ladies and all dads-t0-be get to read this, because it’s very important. The 20-week ultrasound is the “big one” and often the one where you get to find out the gender of your baby. This is also a crucial ultrasound for many people because it’s often where – unfortunately – they find potential heart issues with a baby in utero. Also unfortunately, some heart conditions are missed during this ultrasound because they don’t always look as closely at the heart as they should. I know, it’s sad…but it’s true.
So if you know someone who is having a baby, make sure they read this. If you are having a baby, please read this and remember this. Here are the questions you should ask at your 20-week ultrasound:
- Is the baby’s heart rate normal? A normal heart rate range is 120-180 beats per minute.
- Did you look at the arteries?
- Are the heart and stomach in the correct position?
- Do you see FOUR chambers in the heart?
- Is the heart function normal?
Early detection of a CHD is preferable so you can prepare for the best treatment. It’s not the best news to get, but trust me…it’s better to be prepared than shocked later. And if your baby’s heart looks great, then GREAT! Celebrate! If not, please know that there great treatment opportunities in place, and advances are made all the time.
Moms, please be sure you ask these questions. Dads, please be supportive and ask these questions too. Dads, please be sure you’re actually AT this ultrasound…you need to be involved, healthy baby or not. As parents, it’s your responsibility to advocate for the best care of your child; so ask those questions and demand they look more closely at the heart…every…single…time.
What a day this was. We had to wait weeks after the 20 week ultrasound before going to see the high-risk doctor at the Womens’ Institute and the day finally arrived. We had an early appointment and both had the day off work, so we set off . We got there and everyone was pretty nice: the first thing we did was meet with a genetic counselor, who asked us a bunch of questions about our family histories. Next we settled in for our thousandth ultrasound. This one took awhile, and eventually the doctor came in to look at things himself and even typed out some labels on the ultrasound like “Double Outlet”…whatever that meant. Finally we got to meet with the doctor who said he thought the baby had what’s called Hypoplastic Left Heart Syndrome, which means the left side of his heart is underdeveloped. Whoa. He said he would be handling the delivery of the babies since now they are considered high-risk and our original doctor was not able to do deliveries at the main hospital in Charlotte. He said he’d be referring us next to the cardiologists at the main hospital, preferrably that day. The next thing he said flummoxed me. He said an option for the baby could be “Selective Reduction.” I wanted to put a shoe on him. I was like “NO.” That baby will be born and he will be a BOSS. End of story. He was actually a really nice doctor, he just really got off on the wrong foot.
Anyways, we talked with the genetic counselor again, who worked on getting us scheduled at the cardiologist’s office. She also set up a tour of the NICU and the Cardiovascular Intensive Care Unit (CVICU) at the Children’s Hospital.
We had a lot of time to kill before going to the cardiology appointment, so we decided to have breakfast. We went to a place called Briggs and it was delicious. Why was this important on this day? Because we sat there and decided that, ok they found something wrong. We don’t quite know what the next step is, but they’re going to send us to the people who do know. In the meantime, we should relax, spend time together, and eat. And we did. And it was nice.
On we went to the hospital for our tours. Everyone at NICU was really friendly, but I remembered how dark it was in there…and quiet. I really tried my best not to look at the babies to avoid being sadder than I already was. The next stop was the CVICU: we spoke with a nurse who told us about the floor. I don’t remember much of what she said because my mind was racing, which basically turned her into Charlie Brown’s teacher: wah wah waaaaaah. One thing I do remember is her taking us to a room of her patient. It was a little baby that got out of surgery and he was asleep in his bed. She said “See, he’s doing fine…breathing normal. That’s good. And if you look around, no one here is freaking out, there’s no alarm, no panic. We have it under control.” I would never forget that. I was completely confident in their ability at that point…it was going to be ok in their hands.
Then we had our cardiology appointment at Sanger Heart & Vascular Institute. We sat there in the waiting area, surrounded by photos of kids with heart issues, which is crazy at first. We were finally called back in and briefly met the cardiologist. She was nice enough, I guess, and, and told us we were going to do a fetal echocardiogram. This was basically ANOTHER ultrasound that lasted foreeeeeever. By that point we were so exhausted (my wife must’ve been practically comatose). Once it was done, we met with the cardiologist again. She drew us a very nicely-done picture of a normal heart, then a picture of what our baby’s heart is like or would be like. She did this very matter-of-factly, almost robotically. She didn’t touch much on surgical options and only briefly explained what Hypoplastic Left Heart Syndrome meant. I asked her how often she’s seen HLHS and she just said “It’s rare.” Well rare like what? Sasquatch rare, like you never ever see it? Or rate like, hey we don’t see it much but we know what to do? Eventually my wife started to cry, and the doctor looked nervous. She handed my wife a box of tissues and walked out. And I hated her for it. Despised her, in fact. How dare this lady be so cold? How can she work with parents of unborn sick babies and behave so icy? I was furious, and would harbor those feelings towards her for quite awhile (more on that later).
Once we settled down, we went to the check-out to make a follow-up appointment. Then I heard music to my ears, “Oh that doctor isn’t available next week, would another one be ok?” I was like, “YES! ABSOLUTELY
!” Anyone is better than her, right? (more on that in another post, too).
So our fears were confirmed. Our baby would be born with a congenital heart defect called Hypoplastic Left Heart Syndrome. But what did it all mean? Was he going to make it? What kind of life would he have? What kind of life would WE have? Oddly I didn’t feel as overwhelmingly sad as I did after our previous appointment. By this stage in the long day, we knew something was wrong, and now we just needed to know what was next. Don’t get me wrong, it wasn’t super-joyous either, but I was just looking forward to working with a doctor that WASN’T the one we met today. We drove towards home in disbelief and shock, and picked up Hudson from daycare. Smart move: it’s hard to be upset when that boy is so happy to see you. We definitely needed his smiles and hugs.
At that point I was just thankful for my growing family, no matter what the difficulty ahead may be. I had faith that God would get us through (as mad as I was with Him earlier), and we’d be depending pretty heavily upon that faith.
It’s amazing to re-live that day and all the emotional ups and downs associated with it. All things said I am grateful my wife and I are a great team. She’s so strong…stronger than I am, and I was glad we were fighting the battle together.
Until this stage in the game, my wife’s pregnancy had been going pretty well: we had all the standard appointments, the babies were growing well, we liked the doctor. Then came our 20-week ultrasound, and the day that would really change our lives forever…
I was looking forward to seeing the boys, as always, and this was the big ultrasound where we’d get to see them more than usual. The ultrasound started normally, with the tech chatting with us and showing us everything about our two boys. To this day, I really can’t remember why, but my wife mentioned how her sister’s daughter was born with a heart defect. She and the tech chatted about it briefly as the tech began to look more closely at the heart. Baby B’s heart was fine, but as soon as she began looking at Baby A’s heart, all the friendly chatting stopped. In fact, she stopped talking altogether.
As I mentioned before, pregnancy terrifies me. And those moments of silents felt like eons, and I began to feel a chill then a cold sweat coming on. I got really, really nervous. Meanwhile the tech said, “Sorry, I’m just trying to concentrate a little harder here.” I knew by her silence that something was wrong.
We went to meet with the doctor, whose often joking tone was very somber and serious. He said the babies are growing fine, Baby B looked good, but he noticed something unusual about the other baby’s heart. He said he wasn’t sure, but he described it as “pretty serious.” And that’s about as far as we got in terms of an explanation. He would refer us to the high-risk doctor at the Womens’ Institute, who will help give a second look. Finally, before we left he said something along the lines of, “It could be nothing, but to me it looks pretty serious.”
I was in a fog. I’m not even sure if my mind was racing or if it shut off entirely. I have no clue, all I know is that all my pregnancy-time terrors came true…something was wrong with one of our babies. And I’d have to wait weeks to find out what it was. I hugged my wife in the parking lot and tried my best to reassure her and be strong for her. We both had to go back to work, though (I really didn’t want to), so off we went our separate ways. I got in the car and drove pretty much 25 feet before I completely lost it. I mean, what the heck? What the heck did we do to deserve this? Haven’t we been through enough? I was sad, I was angry, I was confused…it was crazy. I begged God to make it better, because babies don’t deserve that. He could make me sick if He wanted: Go ahead, God…take my arm, take my leg, take the nose off my face…whatever…as long as he’s ok.
I sat in the parking lot of my job and prayed that the next appointment would show that the baby was ok and that we’d be able to look back and laugh, saying “haha remember that?” I walked into the building and one of my co-workers asked how it went. I remember sitting in her office, still in a fog, staring off into space and saying “Not good.” It’s funny, I walked in not wanting to talk to ANYONE, but once I started to talk about it, I felt a little better. It made it real, like this is what it is, or at least this is what we think is going on. How bad it is remains to be seen…
I like to tell people that when we were expecting our first child, I was SO convinced it would be a girl. I don’t know why, I just thought that. I tried my best to prepare mentally: specifically perfecting the evil eye I would give any boys who would try to step to her. Well…I was wrong. We had a boy, and he’s awesome. I love Hudson with all my heart and I love being his dad.
This time around I was pretty confident that at least ONE of the kids would be a girl, and that’s what my wife wanted too. We went to this 3D Ultrasound place in Fort Mill (we used them for Hudson too and they’re awesome) with my Mom and Aunt. The big moment arrived and…boys…both of them. Cool! “Hudson will have someone to beat up on,” I thought, “and they’ll gang up on him too, it’ll be great.” Then came the other fun stuff like “Oh Lord, they’re gonna eat us out of house and home!”
Not a day went by during my wife’s pregnancy that I wasn’t completely amazed that we were having twins. Heck I STILL can’t believe we have twins!