Drew's Story
On May 30, 2008, at 6:02pm, our beautiful son, Andrew William Brown, was born. He was gorgeous, pink and healthy. He did spend some time in the NICU for low blood sugar and rapid breathing, but was able to come back to my room very shortly after going down there. After two uneventful days in the hospital, we were released home. During his hospital stay, nursing went extremely well. He latched on quickly and nursed passionately. Once we got home, nursing got a bit more difficult, but he was still eating. When we went to his first appointment, 48 hrs after being released, he had lost nearly one pound. I was encouraged to nurse him every 1.5 to 2 hrs and to be extremely vigilant about his nursing, making sure he was swallowing, etc... This is when everything started to go downhill. He wouldn't wake to eat. We had to strip him naked and put a cold washcloth on him, and still, nothing. We finally decided to switch to a bottle and struggled for 2 weeks to get him to stay awake to eat and put on weight. Finally, he did and we thought the worse was behind us. Little did we know, it was just beginning...
At Drew's one month appointment, his Ped heard a murmur and personally called the Cardiologist's office to get us an appointment for the following week. At 6 weeks of age, Drew was diagnosed with Pulmonary Stenosis and Atrial Septal Defect. The reason for our struggles with feeding were now clear, he just couldn't eat because his heart was working overtime to pump blood to his lungs. We monitored his PS for months and finally, in December, it was determined that it was now severe and his right ventricle was becoming enlarged from working 3x as hard as it should've been. In February, 2009, Drew underwent a balloon valvuloplasty that was partly diagnostic and partly interventional. The interventional part was unsuccessful and they were unable to balloon the restriction. Open heart surgery was in order and that was performed on March 27, 2009. During the 5 hour surgery, they repaired his main pulmonary artery by slicing strategically and opening it up with patches. His MPA is now 30% patch and 70% Drew's own tissue. They also closed his dime sized ASD, which in a 9 month old, is not small.
He recovered well and is making strides in gross motor development now, following the surgery. He's not quite walking yet, but he's very close. He is the light and love of our lives. We have been truly blessed by God. We still have follow ups, and the stenosis has come back slightly, but it remains mild thus far. We are also doing genetic testing to see if his has Noonan Syndrome, or the like. His wonderful temperament, big smile and gorgeous eyes tell us he is 100% better than his pre-surgery days. Thank God for the wonderful surgeons at Children's Hospital of Michigan and for his Pediatrician and Cardiologist.
I pray we can one day have a world where no more babies need undergo open heart surgeries, no more parents lose their little ones far too soon, no more lives cut short. We need more funding for research into CHD! It kills more children annually than all pediatric cancers combined and yet, funding for pediatric cancer is 5x higher than for CHD! Something needs to be done to increase funding. Please join in our efforts!
Thank you!
Mary, Bill and Drew Brown