I’m finally having my first medical meeting without a mask on! I can see the doctor’s face! We are on a telemedicine call and I’m meeting the surgeon who will work on my baby’s heart. The surgeon explains the procedure including that the conduit can come from various places- including a cadaver. (I have feelings about this that I’ll explore later). For now, I’m cautiously asking the doctor about success rates with small babies. They tell me that he did the same surgery on a baby that weighs less than my baby- and that child just turned 16. I’ve found my surgeon!
Author: Summer Porter
Journal-Blood needed
I’m back at the hospital again. This time it’s for an anesthesia consultation. I can never figure out when/how to tell medical providers about the death of Breelyn. I need my entire team to know- including anesthesia. So I take a deep breath and say it. And it’s ok.
I’m told that there could be blood loss during the scheduled c-section. I ask about getting blood donated for me and the baby and learn that it’s more trouble than it’s worth. I’m a bit bummed. I know that there is a shortage of blood and I’m sad that I may have to take a withdrawal. I vow to donate blood when I’m well as a payback for the generosity that I’m being shown.
Journal-Uterus needs help
Just 24 days before I deliver my baby, I’ve finally found a hospital that can safely deliver him. I navigate the one way streets and attempt to avoid pot holes as I try to find the parking garage. I miss the correct garage which ends up costing me an extra $20 because they don’t validate. But, I make it there on time. Well- I’m actually a bit late, but my cousin-in-law is on time.
I’ve brought a friend because I’ve found that I seem to shut down when there is detailed complex information shared. And I know that there will be A LOT of information. Another table to lie upon while my cousin in law sits in a nearby chair- pen poised and ready!
Confirmation received- baby has Tetralogy of Fallot and I have a problem with the placenta. The doctor who will deliver me doesn’t know for sure how extensive the placenta growing into the wrong body parts is- but a hysterectomy is mentioned.
Wow. Well, ok. I’m not planning to use my uterus again for a baby delivery and I can’t say that I’ve loved navigating monthly periods since the age of 13. So, ok, this may be ok.
Oh and Tetralogy of Fallot means that baby will have numerous surgeries. The first to occur soon after birth.
And it also takes me 45 minutes to locate my parking garage☹
Journal-Serendipity
My mom is sharing her frustration while getting her hair cut. Bless the stylist, her listening ears, and her compassion. The stylist has a baby with a heart defect. She’s been through this. She interviewed hospitals and chose University of Maryland Medical Center to take care of her little one. The stylist asks my mom for my contact information and ten minutes later, someone is calling from the University of Maryland Medical Center Fetal Heart Program. It seems so weird that the lifeline came from my mother’s hair stylist. Serendipity- for sure!
Journal-I’m a ticking time bomb and I need a plan ASAP
I’m at a loss. I’ve requested to transfer to a hospital that specializes in children’s heart issues. But no one from the hospital calls me. Six weeks go by… I don’t know where to turn. The perinatal practice seems so chill, and yet now I know that I’m a ticking time bomb and I need a plan ASAP.
Journal-One more thing…
Yet another session of reclining. This time I’m with my OBGYN who delivered Breelyn and assisted with removal of the pregnancies that ended when a heartbeat stopped. She’s been though it with me. And now she’s telling me that she sees something. And it could be a big thing. She mentions placenta acreta. It looks like my placenta is growing into my organs. My doctor doesn’t sugar coat it. It could be deadly for me and the baby. Are you kidding me? I’ve come this far. My baby has a heart defect and now my body isn’t giving him the safe home that he needs and oh yes, we could both die.
Journal-Olympian Shaun White
Have you heard of the Olympian Shaun White my doctor asks? Shawn has Tetralogy of Fallot. Woah I think, well, ok. Shaun has done alright. Maybe this will be okay after all. Will my kid be an Olympian? Probably not. But, this may not be the death sentence that I’d been picturing.
When I write death sentence, I know that it seems dramatic. But that’s my reality. One day I had two healthy daughters and the next day one was dead. My brain doesn’t offer me the luxury of in between. I’ve never had a sick child. I’ve never had to fight through anything. I wasn’t offered the luxury of coming out the other side in victory. My child was dead- and my heart felt that this new child would die too.
So I didn’t celebrate. My family knew of the pregnancy and its challenges but I didn’t tell anyone else. My body wasn’t embracing pregnancy. I didn’t look pregnant. Apart from greeting each and every morning with a vomit session, I didn’t feel pregnant. And I was soon to find out why I wasn’t looking pregnant.
Journal-Unrecognized number
The phone rang. Unrecognized number. My heart stopped. Side note- on the day that Breelyn died, I received a call from a number that I didn’t recognize- I ignored it. It turned out to the be the hospital trying to reach me. Thus- any unrecognized number on my phone results in a mini panic for me. I answer the call, and after confirming my identity, the caller tells me that the test results are negative. My baby doesn’t have DiGeorge’s. He “just” has a congenital heart defect.
Journal-Amniocentesis
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?
Journal-Reflection is now possible…
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?