The Pregnancy was completely normal. Upon delivery, Lincoln had a couple decels and the nurse thought the cord may be wrapped around his neck. By changing positions, the decels resolved and he was born quickly with a great Apgar and in fact the cord wasn’t around his neck at all (looking back, this was probably our first clue that something was off). Fast forward to hour 30 of his life, our pediatrician was doing rounds at the hospital and we could tell by the look on our pediatricians face that something was wrong - he couldn’t find a pulse on Lincoln's lower extremities but there was a clear pulse on his upper extremities. He immediately ordered an echo and within a few hours we found out that Lincoln had what’s called a coarctation of the aorta, which essentially meant his aorta looked like a timing glass instead of a hose and that was blocking blood flow to the lower half of his body. Lincoln was transported by ambulance to Wolfson and thankfully I was discharged and was able to head to Wolfson that day as well.
My very first thought was, what did I do during pregnancy to cause this?! This was our third child after two healthy children so I bended my pregnancy rules a bit by occasionally indulging in sushi, eating some turkey sandwiches, etc. I remember crying to the NICU Doctor that was trying to explain Lincoln’s condition to us and telling us about the open heart bypass surgery he would need in the coming days, and I was balling to him asking if it’s because of the sushi I ate! Come to find out, 1 in 100 kids is diagnosed with a congenital heart defect, regardless of eating sushi during pregnancy or not.
Lincoln had open heart bypass surgery at 5 days old. I still can’t believe that as I’m writing this! The surgeon explained that at 5 days old, the aorta is the size of the tip of a pen! The surgeon essentially removed the narrowed part of his aorta and patched the good parts together. Because he was so tiny, they had to keep his chest open and Lincoln intubated for five days following the surgery. When he was 3 months old, he needed a follow up balloon procedure in the cath lab to try and widen some scar tissue that was causing a borderline narrowing in the aorta again. For now, we have follow up appointments with cardiology every 4 months or so to monitor the narrowing. It’s possible he may need another cath lab balloon procedure but we are closely monitoring!
I remember being both in complete disbelief yet complete comfort that our baby needed this to be fixed! The hardest part for me was seeing Lincoln post open heart surgery, it was very difficult seeing a seemingly ‘healthy’ baby on the outside look so rough after open heart surgery. I think we went into the recovery room too soon after as well and hearing the machines beep and doctors and nurses yelling back and forth about medications and changes to the plan freaked me out, especially with no medical background. Every day got a bit better though!
I joined Healing Heart's Facebook group the night before Lincoln's surgery. A neighbor (of mine) was in the group and her son just went through open heart a few weeks prior so connecting with her and that was a huge help!...The support I received help me feel that we weren’t alone and that there’s a whole group of people that share very similar experiences! During our 15 day stay at Wolfson, I felt like I got my medical degree! Not really, but we were so immersed in his care with the doctors and nurses that we learned so much about congenital heart defects, what causes them, how surgery helps and how incredibly grateful we are to be in this community where there is amazing support!
We are so in love with this sweet boy who gave us quite a wild ride the first couple weeks! - Emily, Lincoln's mom