Colton was born 4/26/16 on his Momma's Birthday at Oishei Children's Hospital in Buffalo, NY. We didn't realize Colton was sick until after he was born. He came out a bit blue, nurses didn't think to much of it cause he regained color fairly quick. When they got him to the nursery is when our lives changed and I heard those terrifying words, there is something wrong with your sons heart we heard a
Murmur and need to get him down to the NICU. After that they did some imaging and testing we learned that his Tricuspid Valve was stuck open so to much blood was flowing through. (That will not fix itself, he will need a valve replaced when he starts becoming symptomatic) Also they noticed that the pressure in this lungs was severe and diagnosed him with Pulmonary Hypertension, unfortunately their is no cure for that. They also stated his PDA (Hole that is supposed to close at birth) was still open, also another hole, PFO was open because of the regurgitation from the valve. While in the NICU his heart rate got up to 300 so at that point they found he had Tachycardia. He is currently on meds for that every 8 hours. At about two months old during a routine Cardiology appointment they noticed he had Pulmonary Artery Stenosis. His pulmonary artery is too narrow for the blood to flow though. (Another thing that we are waiting for him to become symptomatic). Our goal his as long as he doesn't get worse hold off as long as possible until he's bigger and stronger!! Colton’s baby brother Dawson was born 10/31/2022 on Halloween night at the UT Medical Center in Knoxville, TN. He’s a big boy like his big brother was weighing 9lbs and he was 21.5” long! He looks a lot like Colton did too. Dawson's CHD was discovered at 1 day old, the nurse heard a very strong murmur. The immediately took him to the NICU. They had requested a Pediatric Cardiology consult with is where we learned he had Pulmonary Valve Stenosis and Epstein's Anomaly like his big brother. At 3 days old they transferred him from UT to Vanderbilt University Medical Center were the next day he had undergone a Balloon valvuloplasty. They mentioned that this isn’t a permanent solution but we have to get the valve open for now, then we watch and see. He was released a few days later. His Cardiologist said its extremely rare to have Epstein's but to have siblings with it is unheard of! His plan is in the future to do genetic testing and see what the link could be. In the mean time just like Colton he'll go to the Cardiologist yearly and let his body tell us the next steps. Thank you for helping us pray for our son and raising awareness for CHD!!
