Expanding one’s family is an exciting and amazing journey. For Russell and Victoria Parker, this was exactly what they had in mind. The blessing of another child became a reality for the couple when they learned they would welcome a baby boy in early 2018. However, they were blindsided by a difficult diagnosis.
“Along with the exciting news, we also learned our sweet boy had complications. Our doctor told us he wanted to refer us to a specialist for more investigation and planning for him,” Victoria says.
The parents were nervous. Specialists, testing, struggle — all words not in the family planning they had imagined.
“Our specialist appointment lasted seven hours, each minute worse than the last,” Victoria recalls. “[The doctor] told us our baby had complex medical conditions and needed to be born in St Louis for help at life. At this point, all we knew was Hunter had a piece of his brain missing, a small stomach, and his heart didn’t look right.”
Even with a harsh diagnosis, the couple had great hope for their child. They tightened finances, went to weekly local appointments, and trips to St. Louis.
“We delivered Hunter on January 8, 2018. He was delivered in an OR with prepped OR doctors and nurses to do open heart surgery at birth. He was born breathing in fluid from his stomach. And when his first breath happened, he stopped breathing,” Victoria recalls. “All the people rushed to him, intubated him, hooked him to IVs and all this other stuff, and pushed him out of the room. They took him to cardiac ICU, where they made Russell leave the room when he flat-lined again. He did this a third time before being stabilized.”
Diagnosed with CHARGE syndrome, Hunter underwent a large, complex surgery at one day old. After two weeks of healing the couple was finally able to hold their son. Not long after, they learned he had an immune disorder leaving him with the inability to ever fight off even the most minor infections.
“The newborn screenings showed that Hunter had no thymus,” Victoria says. “The thymus tissue houses our cells, schooling them to build our immune system. This isn’t something we can fix with medicine or a simple procedure. It’s a transplant that only Duke University in North Carolina can do.”
On Angels’ Wings (OAW) came in to help celebrate the life of Hunter through free photography while the family was in the NICU at St. Louis Children’s Hospital (SLCH).
“OAW…[captured] the moments we were counting so close to seconds,” Victoria says. “The photographer wore her mask and gown and gloves. She left her bag outside and captured beautiful images of Russell and I along with Hunter. Not only did we get the chance to get newborn pictures, but we got to meet someone who wanted to touch someone’s heart.”
Hunter was able to go home for the first time since his birth in April of 2018. Unfortunately, he didn’t stay there long due to his complicated diagnosis. Hunter has had approximately 30 hospital admissions, eight surgeries, 12 procedures and numerous blood draws and testing. The family of seven lives each day with a strict regimen of isolation, gloves, masks, cleaning wipes and challenges.
“The love is pure. Even if its a risking, long trial in life, capture the beautiful moments,” Victoria advises families in similar circumstances. Since coming home from the hospital, OAW has provided the family with two additional in-home sessions to capture Hunter’s continuing journey, and will continue to provide periodic pictures for the family over Hunter’s first 18 years.
The couple had high hopes of a life-altering thymus transplant for Hunter, which was set to take place in early 2020. Unfortunately, proceeding with transplants for Hunter and other children also missing a thymus was denied by the Federal Drug Administration (FDA) in December of 2019. The FDA study has been on-going for 25 years with only 73 out of 101 transplant approvals. There is a long waiting list for these children, all living in a bubble waiting on a thymus.
In the face of adversity, the couple continues to have hope for Hunter and the family’s future.
“Hunter has amazed us all,” she said. “He will be two soon, and has just learned how to pull himself up. He needs a thymus to keep going!”
Since its inception in 2013, On Angels’ Wings has provided over 600 families with priceless memories, currently averaging 200 families served a year. Services are predominantly provided in Springfield and St. Louis, Missouri with opportunities for growth in Joplin, Rolla, Kansas City, Cape Girardeau and surrounding rural towns in Southwest Missouri. Volunteer, request a session or donate today.
