Granddaughter’s health challenges make birthdays special
By Dennis J. Morrison
“Birthdays are for children!” My mom’s words still ring in my ears. Perhaps what she meant is that, as we age, we greet our birthdays with less enthusiasm. For me, I began to feel a bit uneasy once I became Social Security eligible. At first, I was amused. Then, in what seemed like a blink of an eye, I found myself applying for Medicare! Thankfully, concerns over my advancing age ended in spring 2019.
During the early evening of my 65th birthday, our phone rang. It was my son-in-law. “You have a new granddaughter. Her name is Thea. Laura is fine, but Thea has some medical issues.” My wife and I raced to the hospital. As we arrived, Thea was being wheeled down the corridor to the neonatal unit with her dad at her side. She opened her beautiful blue eyes widely and greeted us. Minutes later, we visited our daughter, who reminded me that Thea and I now shared a birthday. We were “birthday buddies.” What a gift!
Several days later, Thea was transported to Nationwide Children’s Hospital. After a series of tests, she was diagnosed with an extremely rare genetic disorder known as Trisomy 18. While Thea’s condition was labeled “partial” Trisomy 18, it was no less serious. We learned that it was terminal. We were devastated. My mind raced to the beautifully decorated nursery that awaited Thea and the thought that she would never see it.
We immediately made arrangements for Thea to be baptized. My brother, Deacon Tony Bonacci, performed the baptism in Thea’s hospital room, and our younger daughter, a mother of three, proudly became Thea’s godmother.
Thea would spend the next three weeks at Nationwide Children’s. The medical care and emotional support Thea and her parents received from the doctors and nurses were exceptional. Unfortunately, Thea’s diagnosis was confirmed. Her medical team assured her parents that Thea could remain in the hospital for as long as they wanted.
“Is there anything more you can do for Thea?” my daughter asked. “Unfortunately not,” was the response. “Then we want to take our daughter home,” my daughter said. Several days later, Thea was released and sent home on hospice care with her parents serving as her primary caregivers. Possible future surgeries would be dependent upon Thea.
Surprisingly, months passed, and Thea was thriving at home in the comfort of her nursery under the watchful eyes of her parents. Monitors checked her oxygen saturation levels and heart rate. Portable and free-standing oxygen tanks were utilized, allowing her parents to freely move her throughout the house.
While her prognosis had not changed, it was apparent that Thea was enjoying her life at home. Although guarded, her doctors were amazed at her toughness and determination to survive. From my naïve, non-medical perspective, they started to believe in her.
In January 2020, Thea was readmitted to Nationwide Children’s for multiple surgeries. The goal was to improve her airway, insert a feeding tube into her stomach, repair her cleft lip and, quite possibly, address a critical spinal cord issue. After nearly five hours of surgery, Thea emerged, but continued breathing difficulties required her to remain intubated for seven agonizing days.
Thea would spend one full month at Nationwide Children’s during which time her lip healed magnificently (thank you, Dr. Khansa), and slowly her feeding tube became functional. During surgery, it was decided that her spinal cord issues would have to wait. Sadly, while improved, her breathing difficulties continued.
Nevertheless, Thea once again defied the odds and returned home. Her mom and dad were educated on using her feeding tube, including reinserting it should it become disconnected from Thea’s tiny abdomen. Unfortunately, Thea’s breathing issues worsened, in the form of apnea. She would stop breathing, sometimes for several minutes, causing her parents to spring into action to revive her using deep suctioning techniques and conventional CPR. Thea’s medical team decided it was time for further intervention.
Several days before her 18th-month birthday, Thea returned to Nationwide Children’s for an MRI of her brain and spine. Soon thereafter, she was scheduled for surgery on Dec. 17, 2020. The purpose of this surgery was to further investigate her breathing difficulties, a hearing impairment and, if possible, to detach her tethered spinal cord. If left uncorrected, her tethered spinal cord would eventually cause paralysis.
After nearly three hours of surgery, we were informed that Thea’s spinal cord had been successfully “released,” meaning that paralysis had been averted. In addition, we learned that the medical team had new ideas for addressing Thea’s breathing and hearing difficulties. She was discharged from the hospital two days later. What a wonderful Christmas gift!
The devotion and emotional strength exhibited by our daughter and son-in-law during the past 20 months has been truly remarkable. They have inspired us with their unwavering optimism and a unique confidence in Thea. Despite daily challenges, they are succeeding in furnishing Thea with the best life she can live. In return, Thea is providing her parents, family and all of her “prayer warriors” who have joined in her journey invaluable lessons in love, perseverance and, most of all, faith.
As for my thoughts on future birthdays, I am looking forward to celebrating as many of them with my “birthday buddy” as the good Lord will allow.
Dennis J. Morrison is a parishioner at Hilliard St. Brendan Church.