Ava, born 2013

My little Ava was born on February 9, 2013. Other then experiencing morning sickness for 42 weeks I had a non complicated, healthy and full term pregnancy. I had no time emotionally or mentally to prepare for a heart baby. Additionally, I was never told by a nurse or physician that my baby had a murmur during my stay at the hospital. It wasn't until a week into being home with Ava when I discovered Ava's very loud and obvious murmur myself. Having some, but limited medical training I decided to have some fun with my stethoscope and listen to my new baby's heartbeat. I immediately was able to detect that swoosh sound in between heartbeats. The only sign of a problem Ava had no interest to nurse. She would fall asleep during feedings and breathe heavily when she did nurse. Ava simply didn't have the energy to breastfeed. Finally, I decided to switch to pumping and bottle feeding, which helped, but still she experienced heavy breathing during feedings.

 

Ava dropped about two pounds within the first week of life and I was told that it was a failure to thrive and that I needed to supplement with formula. Now we know that the real problem was her heart pumping harder than normal and burning extra calories. During that same time, doctors visited I asked my pediatrician if she heard a murmur. She confirmed yes, but said it was most likely a newborn murmur that is very common. She explained that it was most likely a valve that didn't close, but will close during the first month of life. I remember feeling so relieved at that moment. Even though I promised not to torture myself, I listened to her heart every night. As the end of the month approached my maternal instincts kicked in and I intuitively felt something more was wrong. I waited for her first month check up to mention that the murmur was still present. At that point my pediatrician comforted me and told me I shouldn't be worried yet that her newborn murmur could be taking longer to close, but that she did want to schedule me with a specialist at Boston children's hospital just to be sure.

 

I’ll never forget that cold winter day when my one month old and I drove into the city. I was sleep deprived, but my adrenaline made sure I was more awake then ever before. I knew something was wrong. After a team of pediatric cardiologists listened to Ava's heart they confirmed that the murmur sounded like she has a hole in her heart. They would need an echocardiogram to confirm their concerns. After 6 long hours at the hospital my sweet little baby girl was diagnosed with ventricular septic defect which meant that she did have a hole in the ventricle portion of her heart. The doctors told me that the murmur was completely safe to monitor with monthly visits. Surgery was going to be our last possible option. The plan was to give the hole time to close on its on.

 

Unfortunately, Ava's symptoms became worse. She was exhausted and constantly sweating. Her heart is working overtime and constantly on exercise mode. At times she would take an hour to just finish a bottle. The hole was considered large but the doctors still were optimistic. At 6 months she was put on medication to help get rid of the extra fluid the hole was causing. Just recently at her one year check up we all agreed that it was best to accept that the hole was not going to close on its own. Ava is only in the first percentile and her weight is not increasing. She will be having open heart surgery this month.

 

Story by Ava’s mom, Sarah - Massachusetts