In December 2020, when I was about 22 weeks pregnant with Anika, we had a follow up ultrasound from our initial routine anatomy scan. Nobody had mentioned a possibility of anything being suspicious on our previous scans, we just had a very busy girl who was super squirmy and in an awkward position to get all the routine required views and measurements on the initial scan. I went to the appointment at the fetal unit at the children’s hospital alone (cause, covid), had the scan.. but was then told that I should call my husband to come, and let work know I wouldn’t be coming back that afternoon.
Dr. Mytopher proceeded to meet with us and explain that they found a Congenital Heart Defect in our baby girl. The condition is called Tetralogy of Fallot (“tetra” referring to the 4 main characteristics of the defect and Fallot was the doctor who identified it over 100 years ago). Basically, she had a “hole in her heart” (ventricular septal defect) between the two ventricles, which means that deoxygenated blood and oxygenated blood are mixing, and being pumped to the rest of the body. Another characteristic of the defect is some sort of pulmonary stenosis (narrowing). In Anika's case, it appeared both her pulmonary valve and her pulmonary arteries were narrower than they should be. This means her little heart has to work much harder than it should to get that blood through those narrowings. She also has a right sided aortic arch, rather than left sided. Not part of the defect, but just another finding.
We met with Dr. Bradley (pediatric cardiologist) who explained they would continue to monitor baby closely while in utero. The safest place for her to be, was in my belly, as the placenta was doing all the work and keeping her oxygenated. The real test would be upon delivery, when her little heart and lungs would take over, to see how urgent an intervention would be needed. She would for sure need open heart surgery to close the hole, and widen the narrowings. But that typically would be done after a few months old, so baby would be a bit bigger and stronger and could recover a little easier. She also might be “blue” or have “blue spells” (or “tet spells”) in those months, because her body wouldn’t be getting enough oxygen. It was a lot of “ifs” and “maybes” and only time would tell once she arrived.
Monday, March 15, 2021 was a whirlwind of a day. I was 36 and half weeks pregnant and I hadn't felt well
for about 10 days, with symptoms I attributed to "pre labor" happenings. After spending the weekend in bed, I told my husband that morning I needed to at least go get checked out. I was diagnosed with severe preeclampsia and HELLP syndrome, I was rushed into the OR for an emergency c-section under general anesthetic because my platelets were so low (among other things). I was terrified, and alot sicker than I had realized, but I went to sleep and my husband waited with the NICU team for the arrival of our little girl. Next thing I knew, I was half awake in the recovery room. My husband reported that Anika (still nameless at the time) had arrived safely and was doing great. Our beautiful baby girl went straight to NICU for testing and monitoring, which was the original plan since we already knew about her heart defect, but the emergency delivery added a few other things to monitor her for. I was taken back to my room where I immediately got pumped full of multiple medications to get my body back on track and in working order. After 24 hours of being stuck to machines in my room, I was finally able to muster up enough strength, and shed a few machines for an hour or so, to get upstairs to NICU to meet my daughter. She was a little rock star! Her oxygen levels were all good, and things looked about as good as they could be on the ultrasound. We heard many times during the week “I can’t believe she’s a heart baby!!”.
We were both discharged after 5 days, and during the first 4 months of Anika's life we had multiple cardiology appointments to keep an eye on Ani’s heart and plan surgery. Things still looked really good and we were lucky enough to not experience any blue spells or other complications, but the issues needed to be fixed, as they would cause chronic problems if left untreated.
We headed to Edmonton on August 8th, had our pre-op day on the 9th and had open heart surgery on August 10, 2021. The surgery went perfectly and we were able to see our sweet girl later that afternoon once she was settled in her room in the PCICU. The first few days post-op were a lot of sitting around, letting her rest and heal. She ended up having junctional ectopic tachycardia (JET) which is a type of arrhythmia not uncommon with a TOF repair. To fix the arrhythmia, she was on some medication and an external pacemaker for a few days until her heart corrected itself back into normal rhythm. The evening of August 12, she was extubated and put on high flow oxygen for the night, as she had some fluid in her lungs. By noon on August 13 we were moving out of ICU to the cardiac ward in the Stollery Children’s Hospital for the remainder of our stay. That afternoon Anika had her a seizure. It was so hard to watch her be so helpless as she lost control of her little body.
Because she had been on bypass (a heart and lung machine) for the surgery, they wanted to rule out any major complications that could have caused, resulting in seizure activity. She went for a CT of her head about 2 hours after the seizure. She had a second seizure about an hour after the CT, and then received a large dose of anti-seizure medications. The night went well, but she woke up in the morning and had a third, smaller seizure. Luckily, that was the last one we had to experience. She went for an MRI that afternoon, and it confirmed what the CT found - a few tiny bleeds in her brain, most likely due to the blood thinners she had to be on for the surgery and her delicate brain vasculature. There was no evidence of tissue death (stroke). We breathed the hugest sigh of relief. The next few days focused on recovering, regaining strength, celebrating her 5-month birthday and working on getting back to "normal" so we could be discharged. We were discharged on August 18th, and headed back home that day. Since then, we have had a few follow up cardiology and neurology appointments. Everything is looking beautiful! We have had no seizure activity or other complications since our discharge, and have been able to stop the seizure medication at Christmas!
For the future, Ani will be followed by cardiology yearly. They will watch her heart as she grows, and monitor the patch and valve for “leakiness” and ensure all the pressure measurements in her heart stay within normal limits. If she is to require another surgery, it won’t be for many years down the road. We are so thankful for our beautiful daughter, and the journey she has bravely led us on thus far. It wasn't easy, and she kept us on our toes, but now that the road to a mended heart has been travelled, we look back on the experience with pride and admiration of our daughter. We look forward to all the experiences she will encounter that we will get to watch her display her strength and resilience. I look forward to the day I can tell her about our journey as a family, and explain that her scars are what make her beautiful, special and unique.
Deanna is on Instagram @deannaalyseb