Jessica’s Story Part 3: Why My Child??
It had been a week since Hudson was born and I still hadn’t gotten to hold him. Hudson still had an umbilical line in and they didn’t want to mess it up. That line was only good for a week though, so when it got taken out, I finally got to hold my sweet boy for the first time since birth. It was everything I needed. Pictures didn’t do justice to just how small Hudson was.
The next week, I would spend my days sitting in the NICU room, staring at the monitors, learning what each number meant, and obsessing over his daily weights. I had started on an antidepressant and it hadn’t fully taken effect. I couldn’t even begin to think about my job at that point, so I would just sit in the room with my thoughts.
When we got the diagnosis that there was a heart defect, I didn’t research it much. It was all too much to process at the time. All I knew about the aortic arch of the heart was that it forms between 5-7 weeks gestation. I thought back to every single thing I did before the two pink lines appeared. I had definitely drank during that time, I remember deep cleaning my house, hell I probably ate things you’re not supposed to eat like a pregnant woman. The conclusion I came to, it was my fault. I did something early on in the pregnancy to cause the heart defect. I blamed myself and I didn’t talk to anyone about it because I knew what they would say. I didn’t want to hear them tell me I didn’t do anything because at least if I blamed myself, I had some kind of answer as to why this happened.
About two weeks after Hudson made his early and traumatic entrance into the world, I was sitting in the NICU room, staring and obsessing over the monitors. An old, short gentleman walked in and introduced himself. He was a genetics doctor and wanted to talk to me and my husband. Jarrod was working, so I called him so he could listen in. He began by talking about Hudson’s heart defect and that when a baby is born with a heart defect, they do what is called a FISH study to determine if there is any kind of genetic factor involved. In my head, I thought, well there shouldn’t be seeing as I had to pay a 380 dollar Progenity bill that told me we were at low risk for any chromosome abnormality at 13 weeks.
“Hudson’s heart defect, the interrupted aortic arch, is very commonly associated with a chromosome microdeletion called 22q11.2, also known as DiGeorge Syndrome… and the results of the FISH study came back positive for 22q11.2 microdeletion. Essentially, it means that a small part of the 22nd chromosome didn’t develop correctly.
My first thought (reminder, this is two weeks after a traumatic, premature birth after spending 6 weeks in the hospital on bedrest). Are you fucking kidding me?!?! So it wasn’t enough that my baby was born with a serious and rare heart condition AND prematurely (which only added to the complications), but now they were telling me that he also had a chromosome abnormality that was not picked up by the $380 dollar blood test I did at 12 weeks!? I couldn’t stop asking WHY??? Why my child?!
I could feel the tears rolling down my cheeks as he continued to tell me all the things that may or may not happen with this microdeletion. “Cardiac abnormalities are present in approximately 70% of children with 22q, low calcium levels, a compromised immune system, certain facial features, developmental delays, low muscle tone, and learning disabilities. There is also the possibility of having ADHD, anxiety, autism, and schizophrenia later on in life. It is basically a wide spectrum of things that may or may not happen. It is the most common microdeletion, but yet many people are unaware they have it until they have a child with a heart defect that inherited it.”
I felt completely blindsided. I remembered my first MFM doctor mentioning the possibility of more blood tests but nothing was mentioned again after that. Other than my MFM doctor, not any other doctor in the span of 7 weeks ever sat me down and explained that this could all be a genetic thing.
“So, I’m confused because I did a blood test at 12 weeks and it came back clear.”
“Yes, I saw that in your chart. Unfortunately, that specific brand only tests for the risk of major chromosome abnormalities, like down syndrome, but not microdeletions.” Oh, how wonderful!
“So is this something that could happen again with future pregnancies?”
“90% of cases of 22q are de novo, or new, meaning the parents do not carry this gene. I predict that Hudson is a de novo mutation. It is just something that spontaneously happened and it happened at conception. There was nothing you did during pregnancy to cause this. The chromosome abnormality is what caused the heart defect.”
So there was my answer. Turns out the few beers I had before finding out I was pregnant isn’t what caused the heart defect, it was some weird genetic thing that literally happened upon conception. And it was nothing that myself or Jarrod carried, so it literally was something that just happened. A one in a million chance.
I was already in a fragile state when this genetics guru (who I have come to absolutely love) came to deliver this news to us. It just felt like another punch in the gut. It was already frustrating enough trying to navigate how they would fix a serious heart defect on a very small, underdeveloped baby. I didn’t have the energy to tackle questions about this as well, so we both decided we weren’t going to tell many people about it. There are people reading this now that are just finding out about this and I’m not sorry this is how they are finding out. I’m finally at a point where I can talk about it without crying or getting emotional. Was I emotional because I now had a “special needs” child, yes. Because when anyone gets this kind of diagnosis, they grieve. They grieve the life they envisioned for their child and it took a lot of time and therapy to work all of that out for myself. Don’t get me wrong, having an actual answer gave me closure as to why this happened. However, it also opened a door to a whole new set of worries about what Hudson’s life would look like.
From the time we learned of the 22q diagnosis, I pushed it out of my head. I couldn’t process it at the time and we had bigger problems to attend to, mainly Hudson’s respiratory status. Twice, they attempted to extubate and both times he had to be intubated. I hated that damn breathing tube so much. Cardiology had warned us that they may have to intervene and do a procedure called PA (Pulmonary Artery) Banding. This was needed because too much blood was going to Hudson’s lungs, which they thought was the reason he couldn’t successfully be extubated. We held out hope for 2 weeks that this wouldn’t be needed and that Hudson just needed more time to grow.
On Monday, April 5th, Hudson was still in the NICU and extubated himself (he pulled his breathing tube out), and had to be reintubated. We were feeling down and frustrated because we just didn’t know where we went from there. I had just started skin to skin when a NICU doctor came into our room. She was coming to tell us that she had just attended Heart Boards (where the cardiologists and cardiothoracic surgeons meet to discuss patients) and that Hudson had been discussed.
“Due to Hudson not being able to be successfully extubated 3 times now, they are going to move forward and do the PA banding surgery…and they’re going to do this on Wednesday.”
Wednesday was the day after tomorrow. I felt like I had just gotten familiar with the NICU environment, and now I was going to have to send my son off to his first heart surgery?! ANOTHER DAMN PUNCH IN THE GUT because from the time the heart defect was diagnosed, we had it in our heads that Hudson was only going to need one surgery to fix his heart. Looking back now, I was SO naive and dumb thinking we just had to get a quick heart surgery, and then we would be on our merry way.
When my husband left the room to use the bathroom, I took a picture of myself and Hudson. Tears were flowing down my face. I took this picture because I never wanted to forget the emotions I felt that day. I didn’t want to face the upcoming days, I wasn’t ready, I was so damn exhausted. All I wanted to do was get up and run away with Hudson.
The next day was spent packing up my things and preparing for a few nights’ stay close to the hospital. I met with the surgeon that day so he could answer any questions. He was a man of few words but respected amongst everyone in that hospital. He was pretty point-blank on how the surgery would go and didn’t sugarcoat any of it. Hudson’s chest would be cut open and he would recover in the CICU (Cardiac Intensive Care Unit). He would not go back to the NICU at any point after having this surgery.
Jarrod and I both stayed in the NICU that night with Hudson. It was emotional. We took lots of pictures of his chest, as we knew it would never look that way again. We probably slept a total of 3 hours that night on and off. At 6 am, the nurse let me hold Hudson until the anesthesia team came to get him. They allowed us to walk up with them up to the surgery floor, stopped us at the red line, and said “Okay, if you want to get your Hudson kisses in, now is the time.” We kissed him, told him we loved him and they continued rolling him away.
There’s no way to describe the feeling as you hand off your baby for surgery. It sucks, it sucks really bad. We had a small waiting room just for the two of us, our family couldn’t be with us in that room due to COVID. The time between handing Hudson off to seeing him in the CICU was about 5 hours.
The surgeon came to talk to us when his part was done, explained that it went as planned but we were still in the risky period because we now had to see how his body handled the change. We had to wait a little bit longer after that for Hudson to get moved to his CICU room and for them to get him stable. Finally, a nurse came to take us to the CICU room where we would be able to see Hudson.
Other heart moms tried to prepare me for the sights I would see, but no words can really prepare you for it. Walking into Hudson’s room was 10 times the shock I experienced the first time in the NICU. There were at least 10 medicine pumps on a pole, so many lines and tubes, and monitors that beeped and alarmed, sounds that still haunt me. I walked over to Hudson and barely recognized the small baby I had gotten used to seeing. Hudson was now swollen and sedated.
All I could think was…I miss the NICU…
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