Henry’s Story: 1 in 100

February 12, 2014

1 in 100.

That statistic is the number of children per year who will be born with a congenital heart defect, according to The Children’s Heart Foundation. CHDs are the number one birth defect in babies, and approximately 40,000 babies per year will be born with one.

Never in a million years did I think that our child would be one of those 100. But we are. And this is our family’s story.

For the first 3 years of Henry’s life, we had no idea that he had a heart issue. His spirited and enthusiastic personality kept us on our toes. You know how the second child is a little wilder than the first? That’s our Henry! He was thriving on the height and weight scales. And his energy levels were nothing different than those of his older brother, George. Our little blonde-headed ray of sunshine with a heart of gold was developing and growing normally. By all accounts, he was the picture of health, inside and out.

Our CHD journey started over 3 years ago at our regular, 3-year old well child check-up with our pediatrician. During the routine exam, our doctor listened to his heart, just like they always do. I don’t recall her spending extra time on it, as I had George with me and, as every mother can likely attest, I was busy keeping him occupied. Nothing seemed out of the ordinary during the exam. That was, until our doctor shared that she thought she heard a heart murmur, and that it would be a good idea to get it checked out by a pediatric cardiologist. She was calm, reassuring, and told me that most murmurs are innocent (and they are), and that we should just make our appointment when it worked for us. After all, Henry was on the high end of the growth charts in height and weight, was not sickly, and most certainly was not lacking for energy.

I waited until we were done with our summer vacation and trips, and proceeded to make the appointment with a pediatric cardiologist. For a variety of reasons, namely, the office location that was most convenient to our home, we didn’t get an appointment to see someone until Thanksgiving week. The day of our appointment, I had our babysitter come to stay with George and off I went with Henry to get him checked out. My husband didn’t even come to the appointment, because, after all, we were confident that this was merely going to confirm that he had an innocent murmur that he would grow out of one day. In his words, “I’m sure it’s nothing, call me when you leave.” I thought the same thing.

At the cardiologist’s office, Henry had his blood pressure checked and he had an EKG. All routine and normal. It was when our cardiologist checked his heart that he heard the murmur, and said that he’d further investigate with an echocardiogram.

Henry was a trooper through this entire appointment. He really didn’t know what was happening, but I could tell that he was a little cautious and quiet at all the fuss that was going on over him. He was trying to watch the Dora video that was playing as he held onto my hand the entire time. And I needed to hold his hand just as much as he needed mine for the news that I was about to get.

The echo showed that Henry had a hole in his heart (ASD) and a valve that wasn’t working properly (a mitral valve regurgitation). Have I said yet how AMAZING our cardiologist was during this? He was thorough, he was calm, and he was caring. He showed me exactly what was going on…even though I couldn’t figure out what the heck he was showing me. You know, kind of like when you’re pregnant and you have your sonogram? You can’t really figure out what is what, yet the technician knows where every body part is that’s developing? Same thing here.

The more he explained, the more I started to realize what I thought he was telling me. I asked him point blank: how do we fix this? Open heart surgery? And he said yes…open heart surgery is the only treatment option for Henry. He proceeded to tell me, “I have a son who is the same age as Henry and if I were you, I would get a second opinion.” I could tell that this doctor wanted the best for our child.

My mind was spinning the entire drive home. I got the boys out the door for an outing with the sitter and then called my husband at work to give him the news. We were both stunned, and then he commented about how calm I was and asked if I broke down in the office. I think he was equally as shocked by my calm demeanor. Funny thing is, I’m one of those people who can get stressed over the little things, but when big life stuff hits, I’m pretty darn good at putting it in autopilot and figuring out how I’m going to tackle it. I think that’s just what moms do.

Next call was to one of my very best friends, whose husband happens to be a surgeon. Granted, he operates on adults, but he helped me sift through the report we got and translated it for me. In a matter of 48 hours, he had helped me secure an appointment with another pediatric cardiologist for our second opinion. And off we were….

The next few weeks were a blur of learning about Henry’s condition, interviewing surgeons, and quite simply, processing what was going on. We learned that, while open heart surgery was inevitable, our timing for the surgery was elective. From diagnosis in November, we decided that the following April would be the best timing for us as a family, and also because of Henry’s age. He would still be young enough to not remember much of it.

It goes without saying that our emotions as parents surrounding this were all over the place. Our hospital tour was rough and filled with tears, because that’s where it all became real. The hardest part was when they tell you, “this is the spot where we’ll wheel him back.” And when we were in the hospital, that was the worst part. In the months leading up to his surgery, I’d be bathing Henry and look at his chest, knowing that in just a few short weeks, he would have a scar that would be with him forever. I know it sounds superficial to say that, but you never know what other kids might say down the road. It was hard to look at his sweet little face and think of that. And then we felt peace. We had an unshakable faith in the surgeons that we selected for Henry. Our surgical team, led by Dr. Adil Husain and Dr. John Calhoon of the UT Health Science Center, were, in our humble (and very biased!) opinions, simply the best. Their skill, their bedside manner, and their compassion in working with us as parents were second to none. We are so fortunate to have medical resources and expertise like theirs in San Antonio. I remember Dr. Husain saying that he was “humbly confident” that Henry’s outcome would be good. And he was right.

Henry’s surgery was the morning of Tuesday, April 12, 2011. The almost 3-hour surgery by Dr. Husian sealed his hole and repaired his valve. After less than 24 hours in the PICU following surgery and a few days in the hospital afterwards, Henry was home on Saturday and playing baseball in the backyard.

Today, almost 3 years later, Henry truly is the full picture of health, both inside and out. He’s an active 6-year old boy who loves playing basketball and flag football. He loves Legos, Beyblades, and tormenting his big brother! He’s witty, funny, and extremely entertaining. He does remember being in the hospital, but his memories are fond. Things like how his “spaceship bed” bed moved up and down, how he was able to watch the Battle of Flowers parade from the park on the hospital grounds, and his Child Life friend Deanna. My worries for him about his scar…also known as the zipper? Well, it’s never really bothered him; in fact, he likes to talk about it and other kids think it’s cool. He was recently asked to be a part of a TV commercial for University Health System in which he was featured with Dr. Husain, a fun experience and a great memory for him.

Henry will get checked yearly for the rest of his life by a cardiologist, and those appointments really are just like those well-child checks that we do every year with the pediatrician. His heart is mended and he’s as healthy as every other 6-year old boy out there. To say we’re thankful is an understatement.

1 in 100.

It’s a statistic we never thought in which we’d be counted. But we’re the lucky ones. As if we as moms, we as parents, didn’t realize how miraculous our kids already are, I feel like we’re the lucky 1 in 100 to be blessed with an even greater appreciation for life, for the little beating hearts in our children. We know Henry’s outcome, and his outcome couldn’t be any better. We’re the lucky ones. We know that many CHD kids have numerous surgeries to repair hearts that were never fully formed. And some will have a lifetime of issues. A yearly appointment with the cardiologist? That’s nothing. Our “fix” for Henry’s heart was a one-and-done type of thing. One time, someone asked me if I ever questioned, “Why my child?” And I thought for a moment…why NOT our child? He’s got a great story to tell, and if there’s one thing we can do as a family, it’s to help shine a light on CHD and heart health…for all of us.

Local Resources/Our Favorite Organizations:
HeartGift is an organization that provides lifesaving heart surgery to disadvantaged children living in developing countries where specialized medical treatment is scarce or nonexistent.

If your kids are older, AugustHeart is an amazing organization that provides free heart screenings to students, ages 14-18, in San Antonio and the surrounding counties.

And, of course, the American Heart Association, is a tremendous resource for all things heart-related.

Christina Welch is a San Antonio wife and mom of 2 boys, George (9) and Henry (6). She’s also a Founding Director and Independent Stylist with Stella & Dot. When not chauffeuring the boys, coaching her team of stylists, or styling the world in fabulous accessories, you can find her at the Pilates studio, helping out at the kids’ school, going for a nice run, or on a date night with her husband, Glenn.
www.stelladot.com/Christina