Rosalie (Rosie) was born on February 23, 2018, at home. She came into the world so quickly that the family’s midwives didn’t have time to make it to the house, so she was welcomed into the world by her parents, Samantha and Brian, and her siblings Gia and Waylon. The next day, Samantha and Brian noticed that Rosie was very grey, almost navy blue when she cried, and lethargic. The midwives came to see the family and found that Rosie’s oxygen saturations were very low. The family was taken to their local hospital and then flown over 100km by helicopter to SickKids in Toronto.
At SickKids, Rosie was diagnosed with Pulmonary Atresia with an Intact Ventricular Septum (PAVIS), which is a heart valve defect that does not allow blood to pump from the heart to the lungs. She also had a single coronary artery, a rare heart abnormality. If those were her only diagnoses, the family could have opted to do multiple surgeries that were very risky but which would have meant that Rosie would not need a transplant. At 5 days old, the family did further imaging and it was revealed that Rosie’s defects were too severe. Much to the devastation of Rosie’s parents, the surgeries would fail if attempted. It was determined that Rosie would need a life-saving transplant, and on March 5th, 2018 she was listed for a heart transplant. She was only 10 days old.
Shortly after Rosie was listed, the family found out that Rosie would need to remain an inpatient at SickKids until her transplant. Often, kids who need a heart transplant are able to have a stent put into the duct in their heart while they wait for a transplant. Rosie’s heart had twists and narrowing so a stent was not an option. She would have to remain on a medication called prostaglandins (PGEs) instead. Samantha states that “this medication came with a bunch of painful, scary side effects- especially because she required a significantly higher dose than normally administered…it truly was a “love/hate” relationship with the PGEs. They kept Rosalie alive. But they also tortured her poor little body.”
The medication caused swelling and thickening throughout her body. She was unable to eat due to thickening in her stomach from the medication, so the medical team advanced a tube into her intestines. She was unable to move her limbs and after 2½ months required continuous morphine infusion because of the pain due to the swelling in a membrane layer around her bones called the periosteum. This periosteum thickening also caused her bones, primarily her hips, to form and grow abnormally. As a result, Rosie developed hip dysplasia. She also had thickening of her eyelids and could barely open her eyes. Due to these side effects, in May when Rosie was just three months old, she was moved to the most critical status option on the transplant list.
While Rosie was listed, Samantha stayed at SickKids with her, and Brian stayed at home with Gia and Waylon. As Samantha previously stayed at home with the children, the family’s two-year-old had to go to daycare and their six-year-old had to go to before/after school care, resulting in unexpected financial stresses during an already tumultuous time. On the weekends, Brian would drive over two hours with Gia and Waylon to Toronto to visit Samantha and Rosie. Samantha acknowledges that Rosie’s medical needs altered their family forever. “Having a child who almost died and who has special needs changes everything. Our family is much more intentional. Compassionate. Slower paced. We don’t take things for granted that we used to. It has definitely made us all closer. Our older two children went five months with only seeing their mom and baby sister on weekends. And seeing their baby sister constantly swollen and hooked up to tubes and wires. They could barely touch her. It would be impossible for this circumstance NOT to change us and our family. It was a scary year.”
The family’s social worker told Samantha and Brian about the David Foster Foundation once Rosie was listed. The Foundation is proud to have been able to provide funding to Rosie’s family for the extra expenses they incurred because of transplants like childcare, accommodation in Toronto, gas, parking, and meals at the hospital. Samantha shares that the Foundation provided “so much relief during THE scariest, most stressful time so far in our lives. We did not have the mental energy to have to worry about providing for our family during this period of time where we lived in two different places. And DFF single-handedly took that stressor away.”
After over 16 weeks, the day the family was waiting for came. On June 26th, 2018 at 7am, Samantha and Rosie were visited in their room by one of the transplant team cardiologists. There was a heart for Rosie. After a successful surgery, in the earliest hours of June 27th Rosie’s gift of life began beating in her chest.
Post-transplant, Rosie was required to stay at SickKids while she recovered. She had many more medical procedures including an MRI and g-tube insertion. One month after Rosie’s heart transplant, the family shared this message with their loved ones, “One month ago today, your broken heart was removed from your tiny body. Shortly after, the heart from another little baby started beating in your chest, giving you a 2nd chance at life. Thank you donor family, for this heartbreaking, selfless decision. I think about you every day. Words cannot express how much your family means to us. Rosalie, these past five months have been the biggest challenge I could never have even dreamed we would be enduring. But we would fight for you all over again if we had to.”
June 27th, 2019 marked Rosie’s one-year heart transplant anniversary. Samantha shares with the Foundation that “things do not end here on her health journey. Transplant is not a cure. Rosalie will remain on immune-suppressing medications her entire life and will always be at a heightened risk of getting very sick. And with current medicine, at some point, this heart will fail to work in her body and she will need another transplant. We pray that is decades from now and hopefully by that point there are different options available!”
Today Rosie is doing well, and the family continues to celebrate the milestones that Rosie meets like gaining weight, transitioning into having her g-tube supply blended food instead of formula, and getting to celebrate her transplant anniversary with her family’s loved ones.