Updated: May 11, 2021
It was six years ago in January that Caylyn and Chris, as well as the world, welcomed the small miracle of Oliver. Oliver is unique because if you take into account, he was seven weeks premature when listed for transplant and six weeks premature when receiving a heart transplant, which makes him the youngest person ever to receive a heart transplant.
Oliver has been fighting for his life even before his birth on Jan. 5.On Caylyns 20 weeks well check during pregnancy, doctors noticed that something wasn’t right with Oliver’s heart. She was watched very closely in the weeks that followed. Her doctor’s advised Caylyn that the longer Oliver stayed in utero, the better his chances for survival. They were hoping to get her to 37 weeks. Even then, the prognosis was grim. Oliver’s defect was cardiomyopathy, which, to be noticed on an ultrasound, showed it was very severe. Caylyn was counseled to seek help from palliative care and make preliminary burial plans if the worst happened. She met with the Ryan House, an organization dedicated to helping families with end of life care for children. Caylyn had even bought the clothes she would bury him in.
At 33 weeks, Caylyn’s worst fears were coming to fruition when her water broke. She woke up terrified. Both she and her husband were afraid that she would lose Oliver because he was being born too soon. She immediately called her prenatal cardiologist and went to the hospital. Her medical team was already prepped and ready when she arrived, being a high-risk case. They tried furiously to help contractions stop. Caylyn labored for 72 hours and eventually gave birth despite their best efforts.
He was born naturally, even with the fear that his enlarged heart would be compressed and cause problems. Caylyn said the final birth process went so fast. He was so tiny and didn’t make a sound. She got to kiss his little head and then hand them off to her team. She says they were well-orchestrated and passed little Oliver down the line to connect him to IV’s and enteral nutrition through this tiny belly button. Caylyn’s mother followed Oliver to the NICU. When she arrived in the room, there was already a large team of doctors working on getting Oliver stabilized. His team filled the room for hours. Caylyn’s mother was patiently waiting outside, knowing they were doing everything that they could.
Meanwhile, Caylyn was discharging from the hospital as quickly as possible to be with Oliver. Her prenatal cardiologist, Dr. Lindblade, walks in as Caylyn and Chris are packing up their hospital bag. Caylyn was terrified it was awful news until she saw the smile on his face. He noted that Oliver was beautiful and was hanging in there. Caylyn fell on the bed with a sense of relief and a brief moment to catch her breath.
The next step was very carefully planning emergency evacuation from Banner Good Samaritan to Phoenix Children’s Hospital. The route had to be planned down to the detail as to avoid any major bumps or potholes that could dislodge a large clot found in his already enlarged heart.
By the time that Chris and Caylyn got to Oliver at PCH, it was morning. She had to get special permission to leave before the 24-hour observation window recommended for new mothers. They raced to the car and then to the hospital. By the time they reached the room, she had described the room as peaceful—the nursing staff at laid all of the cords out perfectly. The room was dark and quiet. She said that it was the first time she had peace and a moment to breathe in the past week. At this point, it was a wait and see process.
Over the next few days, there were still many ups and downs, as would be expected with a baby surviving so much already. Medication and oxygen were at a maximum to help mitigate the worsening of his ejection fracture and condition overall. ECMO wasn’t even an option as they had never tried it on a baby so small. Plus, stroke was a real danger with the enlarged blood clot still in his heart.
When he was four days old, everyone knew that it would either be transplant or decline. He was listed on a Friday. Within 48 hours, they received the call. Before sending Oliver to the OR, the nurse asked Caylyn if she wanted to hold Oliver. With babies in cardiac distress, parents often aren’t allowed to hold their babies for days for fear that any small movement could kill them. This moment was different. She held her baby for the first time, not knowing if she would ever get to hold him again.
He was six days old when he underwent a heart transplant at Phoenix Children’s Hospital. The transplant team kept Chris and Caylyn informed with text messages through the night as they performed the surgery. They would get texts telling them of the first incision, Oliver on bypass, the heart has arrived, and finally, the heart is in and beating. Upon the final text, Chris and Caylyn were on their way and waiting to meet Oliver in the ICU post-op.
Upon entering the room, the doctors inform them that everything went as smoothly and perfectly as possible.
About a month after his surgery, the family was beginning to have real hope. They got to present at a special Valentine’s celebration meant to honor all the heart babies and the medical staff in the heart center at PCH. They finally got to have a baby shower for him.
Caylyn said she and Chris are forever grateful to Oliver’s doctors and nurses. “They never gave up hope, and we’re so grateful for that,” she said.
Today, over six years later, you would never know Oliver was such a miracle. He runs around the house with his three brothers and baby sister. Oliver is excited to play soccer once able to. He won a medal in the last Arizona Transplant Games. He loves school, even though it is virtual. His glasses and beautiful blond curly locks frame his radiant smile. He is happy and healthy.
Caylyn has made contact with Oliver’s donor mother through the Donor Network. The donor mother also had a host of complications during pregnancy due to a hyper-coiled umbilical cord. It wasn’t even a question of whether to donate when asked. She didn’t know it was possible at first but was glad that she could.
Before COVID hit, you could often find Caylyn’s warm and welcoming smile as a volunteer for Donor Network of Arizona. She has a deep calling to give back after the gift that Oliver received. Her advice to new parents just entering this journey is to trust the process; this transplant community is beautiful and welcoming. As scary as this all can be, the clinicians just want to see the babies survive and thrive. Things may seem out of control, but know there is a greater plan at work. Caylyn credits her faith, whether you pray or you meditate, just to make time for self-care. Because it’s a lot emotionally, a lot mentally, and then you’re going to learn a whole new world of possibilities.
Want to help Oliver? Donate: Children's Organ Transplant Association > COTA for Oliver C
A big thank you to my friend Caylyn for sharing this very personal story. Oliver (and his family) is an inspiration to so many of us.