I found out I was pregnant in October 2022 and had the easiest first trimester. No morning sickness, no exhaustion, aches or pains but I just knew I had to be pregnant. I took a test the week before I technically should have and it came up positive. I thought I had won the jackpot - it was our first month trying and I felt great, even up until my 20 week scan. Most days I forgot I was pregnant. I sometimes think I took advantage of how easy it was for us to get pregnant, stay pregnant and feel as good as I did. All of my bloodwork leading up to my anatomy scan was clear, and the anatomy scan looked great except they 'couldn't get great pictures of the heart' so recommended me for a fetal echo. They didn't say that they saw anything concerning, but just blamed it on the baby's position. I read that this was normal, and my doctor assured me it was just a precaution and there was no rush, either - just to try to schedule it in the next few weeks.
I took this recommendation lightly and begrudgingly booked an appointment even though I didn't think it was necessary. 'Just trying to bill insurance (and me) for unnecessary testing', I thought. It was a snowy day in March, which isn't totally out of the ordinary for New Jersey, but the fact that it snowed now is a detail I can't forget for some reason. I drove to a fetal echo place in upstate New York and immediately knew something was off. The technician was quiet and took a long time to complete what I thought would be a quick exam. She kept leaving to talk to the doctor and then after an hour the doctor came in and told me to get dressed and he would come talk to me in a private room to discuss what the results meant.
They sat me in a small room with a comfy chair and box of tissues next to me. I knew this was a room where people got bad news. The doctor told me that my daughter's heart was 'not normal'. He told me to google Hypoplastic Left Heart Syndrome. I remember thinking back to this and wondering how a doctor would ever suggest anyone google, isn't that what every doctor tells you not to do? Anyway the conversation was a blur, but a few things stood out. Comments like 'your baby is fine for now, but once she is here, the quality of life is something you need to consider', 'surgery is inevitable' and 'in the state of NJ you have options for termination'. Termination, at 24 weeks. I still get sick thinking that he ever even made that suggestion.
They referred me to Columbia in NYC and that's where we were set up with our new team. I transferred care over there and was told that my daughter didn't technically have HLHS, but she did have left-sided heart lesions, surgery would be required, but there was a chance at life. Originally they thought that maybe her surgery could be a one-and-done type of surgery, but as they monitored my fetal echos every 3 weeks until I delivered, her heart disease did progress and get slightly worse. I was induced at 39 weeks, and had a beautiful delivery and 15 minutes of skin to skin before they took her away. She was born 7lb10oz and scored a 9 on her AGPAR score. I thought maybe there would be a miracle that they were wrong.
She went to the NICU right away and needed to be assessed and hooked up to all of her wires right away. I delivered her at 12:54am and was able to see her around 11am. She was on a CPAP machine due to some breathing issues and the reality of the situation sunk in. She was so fragile and I needed permission and help from nurses to be able to hold her. The next few days and weeks were a blur of doctors coming in to talk to us. I wasn't able to breastfeed but I did pump every 3 hours like it was my job, because it was, and it was the only thing I had control over. On day 6 of life she had her first open heart surgery, the Norwood, which was just to buy us more time until she was big enough for another surgery. She stayed in the NICU and step down unit for a month, while we worked on transitioning her off of her feeding tube which we were unsuccessful with.
We went home with a feeding tube which I was strongly in denial about, and a list of maybe 10 medications that she needed multiple times a day - a far reach from the type of mom I thought I would be (Tylenol? Never. Vaccinations? some, and at my own schedule.) We were hooked up with pulse ox monitors, feeding supplies etc., visiting therapists. Basically turned our home into a mini hospital room, but without the extensive support of nurses and doctors. My husband was so excited to bring her home but I was crippled with anxiety. How was I supposed to take care of this medically complex baby when I had hands-on support for the first 30 days of life? How was I trusted to do this on my own, when taking care of a baby in general was just so new to me?
We did feeding therapy and physical therapy twice a week, and she went in for a cath procedure in September, where she needed a blood transfusion due to low oxygen. They told me after that that her heart was failing and surgery would need to be soon. They operated her second surgery, a complex reverse double switch surgery, 6 weeks later in November. They flipped the 'plumbing' in her heart so that both sides could still do their jobs but with some support conduits. She came home 30 days after that and had a few scary ER visits due to a heart rhythm issue. In February, at 7 months old we finally were able to get her drinking enough from her bottles and gaining weight that we were able to get rid of the feeding tube and all of its supplies, which made my stomach sink everytime I had to look at it. In some way, the feeding tube was the most difficult part of this whole journey. It was a physical sign that there was something wrong with our baby. Anywhere we went people saw the tube first, and I felt their pity for our baby which was an awful feeling. Getting her off of that feeding tube is where it felt like everything changed.
Our daughter will always need cardiac monitoring, and she will need more procedures (hopefully they can be attempted in the cath lab first, but if not surgical intervention will be required). And her heart will never be 'normal'. She will always have a different heart than most of the population. She is still on 3 medications now, but it feels normal. She is active, smart and hilarious. She has hit all of her milestones (with a slight delay in the beginning) but she is all caught up. She does every activity other kids do and her echos remain stable. We don't know what the next steps would be but every visit that we get told she is stable and good, we celebrate. She is a miracle, in every which way. We were told she would struggle, and she has only proved them wrong.
She is our miracle and has humbled our thoughts on modern medicine and instilled our faith in God. I grew up with a strong faith and always prided myself on it, but it's not until you're crying in a hospital chapel while your infant daughter is in open-heart surgery that you really understand the depth of your faith. And what it means to fully surrender. My daughter has changed the way I see a lot of things and I don't want this to define her. I want it to be part of her story but I don't want it to be what precedes her. I want her to be a positive story because I couldn't find many positive stories when I googled HLHS when I was pregnant.
I think back to what you said a lot during Everett's journey 'you can't protect your kids from their testimony'. This is part of who she is but we are all better Christian's because of it, and maybe that was the whole point.
Thanks for reading!
-Alyssa
