Broken Hearts

• May 16, 2016
• Medical

When you become a parent, you anticipate your baby having a broken heart someday. I envisioned nights on the couch with my teenage daughter after her first break up, teaching her the healing power of Ben & Jerry’s. I would tell her that I knew it hurt but promise it would get better. That rocky road and a swim in the ocean were the cure.

Babies aren’t meant to have broken hearts. That’s what first echoed through my mind when the pediatric cardiologist stood in front of us and said, “So the bad news is she has congenital heart disease.” My sweet six-day old baby. The baby I had worried over in the hospital asking every doctor repeatedly, “You are sure she is ok? She’s healthy?” My precious Ellie Jo, who I prayed for daily the whole time I was pregnant, had a broken heart. Babies aren’t meant to have broken hearts.

I struggled to focus on what he was telling me, hanging on every word. He explained ventricular septal defects, graciously taking the time to draw a diagram for us on the thin paper lining the exam table. He must have sensed I didn’t really grasp what he was telling me because he paused and then explained, “She has a hole between the two bottom chambers of her heart, so some blood is moving between the two when it shouldn’t be. A small hole can be ok, a bigger hole is a problem. Imagine you’re moving a bucket of water from point A to point B within a set amount of time. If you prick a pin sized hole in the bottom of the bucket you have to work a little harder to get the same amount of water in the same amount of time, but not much harder. If you put a golf ball sized hole in the bottom of the bucket, you have to work a lot harder to move the same amount of water. Her heart is the bucket.”

When Ellie Jo was four days old her pediatrician heard a heart murmur and put in a stat referral for us to see the pediatric cardiologist at our local children’s hospital. Two days later we were walking through a huge medical plaza with our new baby wrapped in a blanket, holding her close and willing no one to breathe on her. She had an EKG (electrocardiogram) and an ECHO (echocardiogram) and then we found ourselves in the small exam room with the cardiologist teaching me about hearts by comparing them to buckets. The hole in Ellie Jo’s heart is a “small medium size.” This means that it might be something she can live with forever and never be a problem, or it might be something that requires heart surgery to close. We won’t know until a follow-up visit on June 30^th, which leaves me with an agonizing amount of time to worry about it.

As it turns out, rocky road and a trip to the beach can’t cure all broken hearts. My baby has a broken heart and there is absolutely nothing I can do to fix it. So, while we count down to June 30^th, I’ve done the only thing I can: research.

It turns out, congenital heart defects (CHDs) are the most common type of birth defects. They affect approximately 40,000 babies (about 1%) born in the United States each year. A ventricular septal defect (what Ellie Jo has) is the most common type of heart defect. Just about 25% of babies with a CHD have a “critical CHD” and will need surgery or other procedures within the first year of their life. CHDs are the leading cause of birth defect-associated infant illness and death, often occurring within the first 28 days of the baby’s life. 20% to 30% of people with a CHD have other physical problems, developmental, or cognitive disorders.

These numbers all sound scary, but the good news is that medical professionals are working all the time to improve treatment and learn more about treating CHDs in infants. In Ellie Jo’s case she is fortunate to have a common, treatable, defect and I feel immeasurably blessed that we not only have a fantastic pediatrician who caught it but we also live in a town with one of the best children’s hospitals in the country. Her mama might not be able to fix this broken heart, but she has doctors who can. I pray every day that on June 30^th we will be told the hole in her heart is so small she won’t have to have surgery. But, even if she does, I have faith that thanks to modern medicine and wonderful doctors her heart will be just fine. At least, until the first time she loves a boy who doesn’t love her back. When that happens, I’ll be ready and waiting with a pint of rocky road and I will remember to be thankful for the type of broken hearts that moms can heal.

Information on CHDs found here:
Center for Disease Control and Prevention: Congenital Heart Defects Data and Statistics

Do it all with love.