The Smart Alecs
Welcome to the team page for The Smart Alecs for the Greater Pittsburgh Congenital Heart Walk! We'll be walking on June 24, 2017 at The Boat House at North Park.
Who is Alec?
Alec is our 9 month old son. On August 13, 2016, I (Katrina) delivered Alec 2 weeks early. That night, an attentive nurse noticed he had a loud heart murmur. She called the NICU doctor, who checked him out. She checked his pulse ox, and at that time it was in normal range. Not to worry, they said - this is likely an innocent murmur. On August 15, Alec had a echocardiogram, and was diagnosed with Tetralogy of Fallot. Tetralogy of Fallot consists of 4 heart defects: a ventricular septal defect (a hole between the lower chambers of the heart), pulomary stenosis (narrowing of the pulmonary artery), aortic override, and hypertrophy (thickening of the muscle). He was able to go home with us because his was a more mild version, meaning his oxygen levels were okay. We spent the next 7 months keeping close eye on him, protecting him from getting sick, and getting him nice and big for his surgery.
On March 13, 2017, Alec had his total repair, performed by Dr. Morell at Children's. It was successful, and Dr. Morell was able to spare his valve. Alec had some bleeding due to suspect Von Willebrand's disease, which caused some additional complications, including fluid build up and a chylothorax. He spent 9 days in the hospital and was put on a no fat diet for a month. He's now 9 months old, and has recovered beautifully. We're so proud of our brave heart warrior
Why are we walking?
1. We learned during the course of this how poorly funded research for congenital heart disease is, despite how common it is. Now that we are through the hardest time of our lives, we would like to give back and support research so more babies can have outcomes like Alec's. Some facts: 1% of babies are born with a heart defect every year (about 40,000 in the US alone!) . 25% of those babies have critical defects, like Alec, meaning they need surgical intervention within a year. 25% of those babies die within the first year of life. Congenital heart disease is the leading cause of neonatal deaths. That's about 2500 babies per year. To put that in perspective, about 10,000 children are diagnosed with cancer each year, and about 1250 under age 15 die. Despite this, pediatric cancer research funding is 5x greater than congenital heart disease research funding, and pediatric cancer research funding is already depressingly low. We want to do our part to increase the research funding for this devastating, common disease.
2. We want to meet other families in the Pittsburgh area who have children with congenital heart disease, and get more involved with the CHD community locally.
To join our team, please use the button on this page to join our team. Thank you for your support!