We always knew Jackson was going to be special. Not in the ‘every child is a special snowflake’ kind of way, but more in the way he came into the world – with one of the quietest ‘bangs’ you have ever heard.
My pregnancy was eventful, but not for the normal reasons. Early spotting, a Zika scare, and a misread test where they claimed I had hepatitis B and reported me to the CDC seemed like enough excitement for nine months. But, unfortunately, we were wrong. We had just returned home from vacation and were headed in to our 32 week ultrasound (a week late, but who’s counting) when the ultrasound tech saw something that looked off. We were initially told that it looked like Jackson had a VSD, or a ventricular septal defect, that caused a hole in his heart. Best case, it would close on it’s own. Worst case, they would need to go in and put in a patch. Routine work, our doctor told us. Nothing compared to the surgery a friends little one had just gone through to repair his heart condition. Just to be safe, we were also referred to a maternal-fetal medicine specialist the next week for more tests.
Well, the VSD was kind of right.
Our MFM specialist confirmed the VSD, but also told us that she was having a hard time finding both outflow tracks on the baby. Basically, she could see his aorta but was having a tough time finding his pulmonary artery. Not a problem, she said. It could be the machine so we were referred to another doctor, a fetal cardiologist who would perform a full echo on Jackson in utero. We were also told that Jackson was tracking small, and to get ready to deliver at 37 weeks. Babies diagnosed with IUGR, interuterine growth restriction, tend to do better at gaining weight once they’re born so we’d be induced at 37 weeks.
For anyone counting, she told us this at 35 weeks. His room still wasn’t painted. The car seat wasn’t tested. More importantly, we didn’t have a clear diagnosis or expectation for when Jackson was born.
We made it to the appointment with the pediatric cardiologist where we got our first dose of real bad news – he also could not find the pulmonary artery and saw what looked to be one, large ‘trunk’ coming out of the heart where two should be. Jackson was diagnosed with truncus arteriosus, a severe congenital heart defect where only one branch forms from the heart to carry blood from both ventricles at the same time.
I mean, he was wrong, but he made a diagnosis, so that was helpful.
At this point, we officially graduated from our local hospital branch and were transferred to the Texas Medical Center at Children’s Memorial Hermann, a great hospital with some amazing doctors and a fetal echo tech that I owe my sanity to. Our original OB/GYN broke up with us – it’s not you, it’s me – and referred us to a team at the hospital that would manage our birth. We had another echo done and, after what seemed like hours, we were asked to wait in a family conference room* while they looked over the results. This time, they came back with the right diagnosis.
Jackson was diagnosed with Tetralogy of Fallot, a (also severe) congenital heart defect, presenting with a VSD, pulmonary stenosis, overriding aorta, and right ventricular hypertrophy. Zach and I literally high fived each other. I am sure this is the first time a pediatric cardiologist had seen this from a family just diagnosed with a severe, life threatening heart condition, but it was a condition we were familiar with and the outcomes were great. We made appointments, toured the NICU, and started to get ready to deliver.
At the same time, we started thinking it would be a good idea to shop around for other facilities in the area that may have even more experience with our condition. Texas Children’s Hospital was right down the street and was ranked #2 in pediatric cardiology. At the urging of family members (thanks, Dad!) we made an appointment for the middle of week 37, cutting it a little close to our prescribed delivery date. No harm, no foul, though, we figured – if we decided we were happy with Memorial Hermann, we could stick to our originally scheduled program and deliver there at the end of the week.
Kids, man. They run your life.
We made it about an hour into our appointment at TCH before they told us my fluid was low. Apparently that ‘oops I peed myself’ feeling I had overnight was actually an ‘oops my water is leaking’ feeling and the stern talking to I had with my belly at 3:00am telling Jackson to get his s*%$ together and stay in there for a few more days didn’t work. We were admitted right away and I was induced at midnight.
My labor progressed quickly, and Jackson’s birth was a total cluster f*@k, but that’s a story for another day and a much longer post. Let’s just say that the expected screaming baby scenario didn’t quite play out for us, and Jackson instead entered the world with a jaw that was a bit too small and a tongue that was a bit too big and an absolute inability to breathe. Our heart-condition baby quickly became an airway-condition baby and would only add on anomalies from there.
So, what’s our deal? What makes Jackson the Jackson-iest of them all? Jackson was diagnosed with the below either at birth or throughout his first 6 months here at TCH, along with a number of other conditions that I either forgot (terrible mom) or are not quite as life-altering as the others. I’ll take some time over the next few months to go into detail on each a bit more and explain how they have affected Jackson, but in the meantime, here is a quick overview:
- Tetralogy of Fallot
- Pulmonary Atresia
- Pierre Robin Sequence
- Meckel’s Diverticulum, repaired via ileostomy due to bowel perforation from Necrotizing Enterocolitis
- Coffin Siris Syndrome
Jackson has spent the last 6 and a half months in Texas Children’s Hospital, bouncing between Intensive Care Units and Progressive Care Units. We are happy to report that our time inpatient is coming to an end, but we would love for you to join us as we embark on a new adventure – the adventure of bringing Jackson home.
*Million dollar idea. Stock family conference rooms with wine. You’re welcome.