Patient Stories

Repairing a Baby’s Heart – and a Mother’s

In October of 2009 my husband and I found out that we would be having our first child. We could not be more excited. This was something we both very much wanted. I went to my obstetric appointments regularly and had excellent prenatal care. About 12 weeks in, we found out we were having a boy.

In January I went for a sonogram to check the baby’s heart. Just by the doctor’s face, I knew something was not right. I was told that it was possibly a shadow or a small hole that would close on its own but was directed to follow up with a fetal echocardiogram two weeks later.

I went in for the fetal echocardiogram with Dr. Yehuda Shapir thinking everything would be fine. But still, waiting for the images to be read felt like hours. When my husband and I went in to meet with Dr. Shapir afterward, he said: “Your son has a transitional atrioventricular canal defect with mitral valve regurgitation. He will need open-heart surgery and I just want to let you know that this heart defect is highly associated with children who have Down syndrome.” It was a lot of information to take in in only a few seconds. Dr. Shapir answered all of our questions, told us what to expect and recommended an amniocentesis to rule out Down syndrome.

My husband and I chose not to do the amnio because whether our son had Down syndrome or not did not matter to us. But what had been a “normal” pregnancy became very stressful and hard to enjoy. I tried to stay positive.

On June 10, 2010, I went in for an anatomy scan and was given a non-stress test. They had trouble getting a reading from the baby’s heart and, concerned, the doctors scheduled me for an emergency C-section. At 11:53 p.m., Joseph Steven was born, 8 lbs. 3 oz. and 20 in. long. I only saw him for a minute because he needed to go straight to the neonatal ICU because of his heart. My husband went with him.

Joey had very low blood pressure, an arrhythmia and the atrioventricular canal defect. He did not have Down syndrome. He stayed in the hospital for 12 days until he was stable and then we took him home, though in the back of our minds we knew we would be back in six to12 months so the defect could be corrected.

Joey was a wonderful baby. You would never know he had a heart problem. He gained weight, reached his milestones and was just a joy to be around. We took him to the cardiologist every month to keep an eye on his heart and he also took medicine four times a day for the arrhythmia. At Joey’s regular cardio check-up at three months old, Dr. Shapir said the surgery would have to be moved up because the valve was leaking more than expected. I thought we had a little more time but I was glad that this would all be over soon.

In October, Joey had open-heart surgery at Cohen Children’s Medical Center. He was just four months and 10 days old and even though we knew there was a high success rate for the surgery, it was the hardest thing my husband and I have ever had to go through. My husband brought Joey in to the operating room and stayed with him until he received the anesthesia. Then all we could do was wait.

After about five hours, Joey’s surgeon, Dr. David Meyer, came to tell us the surgery was a huge success. They were able to close the hole in his heart and repair the valves. We were even given the good news that the surgery had corrected his arrhythmia. This was the best news we’ve ever heard. About an hour later we were able to see Joey. It was very hard to see him with tubes and bandages, but I kept telling myself the worst was over.

Six days after surgery, Joey was able to come home and he recovered very quickly. Now he’s on medication just twice a day for a small amount of residual valve leaking.

It’s been almost four months since the surgery and if it weren’t for a tiny scar, you wouldn’t be able to tell anything was ever wrong. Joey continues to grow and is a very happy baby. If anyone would have told us a year ago that everything would be fine, we wouldn’t have believed them. My little boy is a survivor and has made it through so much in his short little life. He’s our little hero.