February is Congenital Heart Defect awareness month. 1 in 100 babies is born with a congenital heart defect. In the United States, nearly 400,000 babies are born with a congenital heart defect each year.
In 2005, my oldest daughter was the 1 in the 100. Like my first pregnancy, all tests and ultrasounds showed a perfectly healthy baby. Symone was born Monday, August 22nd. She was 8lbs 13ozs and 20 inches long. Ten little fingers, ten little toes and was completely alert. But, to me, her breathing was not normal. After being monitored, for a few hours, I was told that she was perfect in every way. We were discharged on Wednesday, August 24th. I immediately called my pediatrician and set up a well visit for the next morning. The visit on August 25th showed that my daughter had a heart murmur and we were referred to a pediatric cardiologist who was available to see us on September 16th. We were told to return in 4 days for a follow-up.
In those 4 days, my daughter’s breaths became labored, she slept more and ate much less. I found myself manually expressing drops of milk onto my daughter’s lips knowing that a portion of it would sustain her for the 1 day left until we returned to the doctor’s office. We did not sleep because we watched her sleep and counted down the moments until Monday FINALLY arrived.
Our pediatrician listened to our daughter’s heart, looked at us and asked: “When are you scheduled to see the cardiologist?” We told her and she said, “I’ll be right back”. She returned after a few minutes with an appointment to the clinic for the next morning. “It’s probably nothing serious but, it’s better to be safe than sorry.”
The next morning couldn’t arrive soon enough. We met our living angel, our cardiologist. She picked her up and listened to her heart. She called for a fellow angel, who escorted us down the hallway to take a look at our daughter’s heart. Symone was so small and all of the equipment engulfed her. She slept during the test, as expected of a 1 week old. I watched the face of the technician as it fell before she left the room to get the cardiologist we had just met a 45 minutes earlier. The technician pointed out the key findings at which time our cardiologist left and returned with a seemingly every pediatric cardiologist in the vicinity.
We were escorted back to the examination room and greeted by an older man who introduced himself as the head of the pediatric cardiology department. We were told that our daughter had a hemitruncus, pulmonary hypertension, and an atrial valve prolapse. We had no idea what he was talking about and as if reading my mind, our cardiologist explained everything so we would have a better understanding. She then explained that our daughter would be admitted to get things under control. She even arranged for us to stay right down the hallway from the NICU so I could pump and spend as much time with our daughter as possible.
Over the next few days, my daughter’s condition worsened. She was moved into another area of the NICU for the extremely sick babies. She was also given a feeding tube, intubated, medication to keep her asleep and life support to take keep her as comfortable as possible. I was allowed to rub her hair, sing and read to her and of course continue to pump on a newborn’s schedule. Symone’s condition continued to worsen and she was scheduled for surgery.
Before daylight on Tuesday, September 6, 2005, my then husband and I walked our daughter down to the operating room. We were then dressed in sterile clothes and allowed to carry our daughter into the operating room. One of the hardest things I’ve ever had to do in my life was to place my daughter on the operating table, give her a kiss and walk back to the room we were staying in down the hallway from the waiting room.
It’s been 12 years since Symone’s surgery. She lived!
She developed epilepsy when she was 1 as a side effect of the bypass machine but she has been seizure free since 2010 and medication free since 2012. She’s healthy, happy and while she has mild brain damage from epilepsy, she has been an A student for 2 years now. The only reminders from that day are of course her permanent scar that has grown fainter throughout the years and my memories. She looks at me oddly when I tell her bits and pieces of her birth and the first month of life. Then she says “Oh Mom!” All I can do is smile through the happy tears.
For more information on Congenital Heart Defects please visit http://www.childrensheartfoundation.org/about-chf/fact-sheets.
Part 2 coming soon…