I’m transitioned to biweekly and then weekly appointments with a perinatal doctor. Scans are frequent. Something called DiGeorge’s is mentioned. But I’m still cloudy and I don’t think to google what DiGeorge’s is and then one day I do. And the other shoe drops. This disease can be horrendous- in many cases it isn’t compatible with life beyond toddlerhood. And life could be very painful.
The only way to determine if the baby has DiGeorge’s is to undergo an amniocentesis. Another surface to recline upon but this time the lights are high. The doctor explains the process and the things that could go wrong. I breath my way through it and then wait for the phone call.
During the waiting period, I fought myself to not think about the future, but that was all that I could do. What could I do to help my baby if it had DeGeorge’s? What would his life look like? Breelyn died without pain, how would I be able to handle a child who was in pain and could have a painful life and death?
I had so many feelings at the time and spent all of my energy staying afloat in what seemed a sea of despair. But, it looks like the water is receding and reflection is now possible. And so I’m going to allow myself the luxury of looking back, now that I’m on the other side and hope remains.
August/September 2021 I’m over 40 and was pregnant. I’d lost my second child Breelyn to SIDS and had gone on to lose four more children during pregnancy. To say that I was anxious was an understatement. I was trying so hard to be chill. I vowed to do whatever the doctors told me to do and so the story begins…
Because I’m over 40, my pregnancy was deemed geriatric and high risk. I went to the high risk doctor and was told to make an appointment with Pediatric Cardiology. The doctor explained that this was a formality. When a pregnancy is IVF, heart defects are more likely so they send all patients to see Pediatric Cardiology. No worries from me. I’m all for dotting the i’s and crossing the t’s. And so the appointment was made.
I entered the darkened room and reclined on the examination bed. I was told that this appointment would take a long time because they had a lot of pictures to take. Again, I’m actually not worried at all. Reclining in a darkened room for a bit was lovely- almost like a spa😊 The technician finished up and told me that doctor would be in to see me.
Enter doctor. He invited me to join him in an office with a table. He pulled out a picture of a heart and started coloring in paths and talking about blood flow and something called Tetralogy of Fallot. Wait? What? Something is wrong? I’m explaining to him that we’ve already lost Breelyn and I’m trying so hard not to break down. He continues to talk and I’m not processing any of it. At the end, he gives me a hug. I head to the car and I sit.
Who do I call? Will I have support? My family and friends have already supported me through so much loss. Was I selfish in wanting a sibling for Brooklyn? Is this my fault?
