Tessa and Herman’s son Nathaniel was born a month premature weighing only 4.3lbs. Due to his tiny size and suspected medical needs, he had to stay in the hospital for forty-two days. Every single day his mother Tessa would drive to visit him and stay at home only to sleep. Little did the family know that this was just the beginning of his medical journey. This is their family’s transplant experience in their own words:
Initially, we knew there was a medical complexity with Nathaniel and thought a simple procedure or surgery would resolve all issues, but it was much bigger than that. In October 2019 we found out that he has a genetic disorder and was diagnosed with Alagille Syndrome, a rare genetic mutation that affected his heart, kidney, spine, eyes, and severely impacted his liver. During his first year of life, Nathaniel barely grew and was said to be experiencing failure to thrive by his medical team. He was extremely jaundiced, unable to absorb any fat, was experiencing severe pruritus (itchy skin), and his liver was just not functioning anymore.
Nathaniel had to take multiple medications; at least one medication every two hours and was given special formula that tasted and smelled terrible. At the age of six months, Nathaniel started eating solids and was doing great until nine months old. At nine months he had a regression for oral stimulation and started to have a very strong oral aversion. He would not eat anything, wouldn’t drink out of the bottle and wouldn’t even let anything close to his mouth. He would constantly vomit and would not keep anything down. We were told that having a failing liver makes you feel like you have the flu 24 hours a day – I can’t imagine how he was feeling at such a young age. Since he wasn’t able to keep any food down, he barely weighed over 14.3lbs on his first birthday.
Due to Nathaniel’s declining health, we had to fly out to Toronto SickKids Hospital to have a consultation and assessment to see if our son was an eligible candidate for transplant and to confirm the rare genetic disease. We were grateful to have the help and support from David Foster Foundation and WestJet to make our trip successful and safe.
Once we found out that he required a transplant soon, both of us got tested to see if we were matches. Unfortunately, neither of us were a match and we had to look for other alternatives. His Aunt, Becky, knew that their blood type matched so she got tested and she was the perfect match for a living donor. She worked to get all her medical clearances done and it did take a while as it was at the beginning of the pandemic. Once everything was checked off the list and Nathaniel had all his live vaccinations, we were able to book the transplant date for August 20th, 2020.
While we were waiting, Nathaniel spiked a fever and was admitted to BC Children’s hospital in late June 2020. He was experiencing a severe UTI and it was causing him to have a fever. He needed to be at the hospital every day receiving antibiotics. During that time the doctors from BC Children’s and SickKids were discussing how to get him healthy enough for his transplant so they decided to have a hospital transfer from BC Children’s to SickKids for his ongoing treatment.
Since Nathaniel arrived earlier in Toronto, his aunt and grandmother arrived just a couple of weeks prior to the transplant for medical testing. We were grateful that his grandmother was there so she could take care of Aunt Becky post-transplant. While at SickKids, they did resolve his UTI issue, however, his weight was still too low for transplant, so they gave him IV Lipids to get him to gain weight. On the day of the transplant, he weighed 16.8lbs.
His transplant took 11 hours. We paced back and forth constantly. We were extremely nervous, scared, anxious, and just a mix of emotions. Every time someone walked out of the surgery door, we would peep to see and hope that it was his surgeon walking through the door. While Nathaniel was in surgery, his Aunt Becky was in the general hospital right across the street. The entire family kept them in mind during the entire day. To hear that Aunt Becky’s surgery went well, we felt some relief.
After 11 hours Nathaniel’s transplant was complete. We had to wait another couple of hours until we could finally see Nathaniel in PICU. He was laying there with multiple lines, wires, and tubes all attached to him. We couldn’t help but cry with tears of joy that his transplant went well.
Post-transplant, it took him only three days to try to move and stand in his crib. After two weeks, when he was healthy enough, we were transferred back to BC Children’s Hospital. On the flight back, Nathaniel didn’t have a seat booked for him to be in his baby car seat. WestJet was nice and accommodating to provide an empty seat beside his mother so he could sit on his own to be more comfortable while we were in the air.
Once we landed in Vancouver, we were transported to BC Children’s Hospital to continue IV Treatment for another three weeks. During that time, Nathaniel recovered very well and was able to get home passes during the daytime between IV Treatment so he could play at home in comfort.
Nathaniel recovered very well from his liver transplant. He has grown so much within his one-year post-transplant. Although his transplant went well, there are some things transplant-related to follow-up on such as his portal vein stenosis in his liver, bloodwork, and liver enzymes and he requires weekly visits to Children’s Hospital. Nathaniel requires a G-Tube for all his medications and feed – he has an extreme oral aversion and will not take anything by mouth. With the G-Tube feeds, he requires a pump and syringes. He also has a PIC line in his arm for all bloodwork since his veins are too narrow to draw blood peripherally.
Despite the medical challenges, Nathaniel is a very happy boy who loves the outdoors! We love to go hiking, running, climbing, and spend the majority of our days outside rain or shine! He also loves reading and could flip the pages all day and night. He also loves Kobie, our family dog and they play together every day.
