Our son was diagnosed with a congenital heart defect (complete atrioventricular septal defect, or AVSD) after a repeated anatomy scan at 24 weeks gestation.
Congenital Heart Defect Diagnosis
Our sweet boy, Baker Dee.
This little man is constantly on my mind and moving like a wild one in my belly. We’ve had a stressful week with our little guy, one that still doesn’t feel real, if that makes any sense at all.
Backing up a bit, during our 20 week ultrasound, the sonogram tech had a tough time taking a few measurements, specifically of his heart. He was moving a bunch and as a whole, was measuring a bit behind for gestational age. She recommended we come back at 24 weeks for a repeat scan just to confirm everything was A-OK.
We had the 2nd ultrasound on May 8th and after calling in for a second opinion, the tech and my regular OB were concerned about Baker’s heart and the fact that his femur bones were still measuring “significantly” behind (his head and abdomen were considered to be in a “normal” range).
The length of his femur and the fact that his heart was presenting with a possible defect concerned her enough to refer me to a high-risk maternal-fetal medicine doctor for an in-depth ultrasound to find out what was going on with our little man.
Not only was his heart an issue but she talked to us about the possibility of him having a chromosomal abnormality as well.
High-Risk Appointment
We met with the high-risk doc, who also had a pediatric cardiologist come in to look at Baker’s heart and confirmed that our sweet boy will be born with a congenital heart defect that will require open heart surgery to repair, most likely happening by the time he’s 6 months old.
While his type of condition – complete atrioventricular canal defect – can present in seemingly “normal” children, it is also commonly seen in kids with Down Syndrome so my blood was drawn to test for that and several other chromosomal abnormalities to see if Baker will face any additional diagnoses.
We should get those results in a few weeks. We meet with the cardiologist again in two weeks as well to start forming a plan for our little guy.
The good news: this type of defect is FIXABLE.
Yes, it will require open heart surgery but once repaired, Baker has a very, very good chance of living a normal life free of limitations. He’ll be monitored by a cardiologist his entire life but multiple surgeries aren’t typically needed. We are SO THANKFUL that this was caught in-utero so we can be fully prepared when he’s born.
The defect should not hinder his growth while in my tummy and the rest of his organs appear to be developing normally. After he’s here, one of the main concerns will be making sure he’s gaining enough weight to make up for the extra work his heart and lungs will be doing until surgery day.
We are, of course, hoping and praying he does not have Down Syndrome or any other type of disorder that would further complicate his heart issue. If he does, we will love him all the same and be even more prepared to care for him once he’s born. It’s proving very difficult to wait for those results so I’ll welcome the call when it comes so we can have answers and start looking at the bigger picture.
Physically, I’m feeling totally fine; this pregnancy has been smooth-sailing in a physical sense. Emotionally, I’m all over the board.
Coupled with work-related stress (that has since been resolved for the most part! PRAISE!) I was D.O.N.E as of last Monday when my doctor referred me to another office to confirm our fears. I had met my limit. Luckily, Justin kept a cool head and was able to talk me through the different scenarios.
We had all week to “prepare for the worst and hope for the best” while waiting to head to the appointment with the high-risk doctor. Baker’s situation could be better, but it could also be SO MUCH WORSE so we’re still counting our blessings and will be ready to handle whatever is thrown our way.
We are surrounded by family, friends and neighbors, all of whom have already shown us so much grace during this time. We feel very loved and we know Baker has everyone in his corner.
