By Andreea and Cam Appels
After spending 41 of the first 60 days of her life in the hospital, our two-month-old daughter Alexandra had open-heart surgery on May 18, 2022.
Alexandra was born on March 15, 2022, at 38 weeks, through a planned Caesarean section.
I was considered to have a high-risk pregnancy due to complications I had with my son, who was delivered after an emergency Caesarean section at 36 weeks, but the nine months of carrying Alexandra went well. All signs were pointing to a healthy baby and a smooth delivery.
But since it was considered a high-risk pregnancy, I had ultrasounds at 21, 28, and 34 weeks, which all returned normal scans.
I recall the last one when the ultrasound tech showed me her heart and said, “It’s a healthy heart. Look at the four chambers!”
But all these reassurances came crashing down shortly after Alexandra was born.
The delivery went well, but she was admitted immediately from the operating room to the neonatal intensive care unit (NICU) because her oxygen levels were not high enough and needed monitoring.
This was not easy on us, but we were assured by the doctors and the team that she was perfectly healthy otherwise.
Little did we know that this was an early indication of her heart condition.
After a short stay in the NICU, we were able to start spending time with our new baby girl. After we had been at home for a week, however, when she was nine days old, everything changed.
After a walk and a feed, I put her on my chest as she fell asleep. It was then I noticed she was taking fast, shallow breaths. I was immediately overwhelmed with the feeling that something was not right. I opened her sleeper and watched as she was drawing inward under the ribs with every breath she took.
After observing her for an hour, my husband and I called our family doctor, who told us to go to the clinic. He then suggested we take her to Royal Columbian Hospital (RCH), where she was born.
We spent six hours in the emergency room while doctors ran blood tests, a chest X-ray, and an ECG, which came back with normal results.
Despite this, the pediatrician had a feeling something was off and did not feel comfortable sending us home. Alexandra was admitted to the pediatric ward and given antibiotics, and she went through countless tests over the next two days. They all came back negative, but her breathing never improved.
A few days later, the pediatrician heard a slight heart murmur during his assessment.
He called the pediatric cardiologist, Dr. Amanda Barlow, and they performed an echocardiogram to further examine Alexandra’s heart.
We then found out the devastating news that Alexandra was born with a ventricular septal defect (VSD), a hole between the wall of the two ventricles. Due to its size, Alexandra would require open-heart surgery by the time she was six months old.
We were in shock, and our hearts sank. My husband and I had a hard time wrapping our head around the idea of our small baby undergoing open-heart surgery. Her future seemed uncertain.
Within a couple days, Alexandra’s health took a turn for the worse, and the effects of the VSD became apparent. She was not feeding well, and her jaundice worsened, so she required light therapy treatment. She was losing weight when she should have been gaining it. She was extremely tired and was no longer able to feed on her own, which resulted in her needing a feeding tube.
She struggled more to breathe, so they started her on medications to help relieve the extra fluid in her lungs caused by the VSD. We spent the next two weeks at RCH while the team monitored her and adjusted her medication so she could begin gaining weight and breathing more easily.
After 16 days, she was finally at a comfortable level, and we were able to take her home.
The following few weeks at home came with many challenges. We had weekly appointments with cardiology and her pediatrician. She was gravity fed through a tube every three to four hours; however, she was not tolerating these feeds and was vomiting frequently. It was hard for us to leave the house, as we had to keep her healthy.
She required frequent tube feeds, and she did not tolerate the car seat. One afternoon, on the way home from a doctor’s appointment, Alexandra screamed and screamed. She was clearly distressed, so we pulled the car over and got her out of the car seat. She went pale and limp and almost passed out.
We were home for three weeks when she took another drastic turn at six weeks old.
She was pale, irritable, crying constantly, and inconsolable. She went from being okay to struggling for every breath.
Her pediatrician, Dr. McGuffin, told us to come to his office right away. Alexandra’s heart and respiration rates were high, and she did not look well. He made the decision to call an ambulance, which transported us to RCH. We spent a few hours in trauma as they stabilized her, placed her on oxygen to help her breathe, and increased her heart medications. Then, an infant transport team took us to BC Children’s Hospital (BCCH).
We were admitted to BCCH, where we would spend the next four weeks with Alexandra.
Alexandra’s VSD case was a little bit of a mystery and not a textbook one. She had fevers and still struggled to breathe, so they did many tests to rule out infection and any other possible underlying conditions.
The doctors placed her on a feeding pump, but she was still not tolerating her feeds. Her heart was working at 150% all the time, and she was always burning energy. She was slowly gaining weight, but not nearly as fast as she should have been.
The doctors moved her feeding tube from her stomach to her small intestine to help prevent vomiting and aspiration. Lung specialists and respiratory therapists assessed her daily.
After having two more episodes like the one she had in the car, she was assessed by neurology, but everything seemed to be focused on her heart. She was in congestive heart failure.
After 11 days of treating and observing Alexandra, Dr. Barlow, the cardiology team, and the surgeon decided that it was in her best interest to move up her surgery date to the following week. They did not want to wait, as she was not thriving. She was struggling.
The next week went by very slowly, and the anticipation of the surgery made us very anxious. We were provided with many resources, and the surgery was discussed in detail. We were told that a VSD was the most common of all heart defects and the repair was straightforward, but we weren’t feeling reassured. We were told that some babies can tolerate a VSD until they are six months or older. I did not understand why this wasn’t the case for Alexandra.
Dr. Campbell performed Alexandra’s heart surgery on May 18, when she was two months old. She recovered quite quickly, and we were able to take her home five days after. Her feeding tube came out one week later, and as the following weeks went by, our worries began to fade.
Although she endured a difficult start to life, Alexandra is a happy, healthy baby who is hitting her height and weight milestones. She is now six months old, loves to smile and giggle, and is almost crawling. She has shown us that even though she is small, she is mighty, and her heart defect has not set her back one bit. We will be forever grateful to Dr. Campbell, the cardiologists, all her doctors and nurses, and the volunteers and staff at BCCH and RCH.
We can’t even begin to explain the emotions and pain we felt through the entire process. Not being able to connect with someone who has gone through a similar experience felt lonely. It was during the diagnosis that Dr. Barlow provided us with information on congenital heart defects and included a brochure with information for the Children’s Heart Network (CHN). Cam reached out to CHN and was able to speak with another heart parent. It was very helpful and gave us hope that everything would be okay. It helped to be able to communicate with someone who had been through a similar situation and completely understood how we were feeling. We found comfort in the resources they provided and the stories they shared. CHN has created a great support program for heart parents and heart kids. We are now members, and we will continue to support CHN, as they are crucial in helping families get through very difficult times.
This August, we hosted a celebration for Alexandra and a fundraiser for CHN. We were grateful to raise a little over $1,500. Cam and I matched the amount and donated $3,000 to help support CHN. We would like to thank CHN for its support and commend it for all the work it does in the children’s heart community.
Alexandra is a special little girl. She is our rainbow baby. We had several names that we were debating between, but Alexandra is very meaningful to us, and we kept coming back to it.
In November 2020, we unexpectedly lost one of our best friends, whose name was Alexander (Alex). The day after Alexandra was born, we had a special moment when we knew what we would name her.
Alexandra was sleeping with her mouth open, and she looked exactly like her uncle Alex when he would sleep. It was a sign that we had to name her after him. The strength, resilience, and fight she showed during and after her procedure are a true testament of the name, and he would have been so proud of her. ♥
“Alexandra’s Story” is from our fall 2022 newsletter, Heart Matters. See our Newsletters page for more stories and to subscribe.