“A major reason we continue his care so far from home is because you cannot put quality of care on the back burner.”
Since 2016, Tonya and Marvin have endured a long, trying, medical journey with their son, Noah, traveling six hours from their home in rural West Virginia to receive care at UPMC Children’s. Noah was born with a life-threatening heart condition called Tetralogy of Fallot that consists of four heart defects. At six months old, he had his first heart surgery — but it wouldn’t be his last.
Following major complications during his first procedure, which was supposed to be a “typical TOF (Tetralogy of Fallot) repair,” six month old Noah was life-flighted to UPMC Children’s while on ECMO. This marked the beginning Noah’s 290-day stay at UPMC Children’s, which included countless treatments, catheters, chest cleanings due to bleeding, losing his gallbladder over a holiday weekend, and a “last chance surgery” to save his life.
Tetralogy of Fallot is a rare condition found in less than 2,000 babies born in the United States each year. It is known as a tetralogy because it consists of four heart defect occurring together. It commonly causes cyanotic episodes, making a child appear blue when oxygen-poor blood is pumped to the body instead of the lungs.
“UPMC Children’s was far more advanced with drain tubes, ECMO machines, gas machines and so much more,” says Tonya. “This journey is far more difficult than I could ever begin to describe, but it’s comforting to know when Noah does have a procedure or becomes inpatient for anything, that he is in good hands.”
A Special Bond With Child Life
Throughout their stay, the family fell in love with child life, social work, and music therapy services, forming a special bond with Lauren, a child life specialist.
“It may be their job to show up daily, but it was a highlight of our day to see them,” says Tonya. “Lauren was always able to put a smile on our face.”
Due to ECMO, Noah’s clotting risk was extremely high and as a result, his body auto-amputated three fingers on one hand, his entire left foot, and most of his right foot.
“Lauren helped us create memories of Noah’s tiny hands, which is very sentimental since at the time he had ten fingers,” Tonya says. “Noah was never a fan of touching paint, but his creations are treasures in my eyes.”
Lauren even assigned Tonya and Marvin their own weekend crafts as “homework” because she recognized it was a hobby that could keep their minds off the stress of being in the hospital. Noah, Tonya and Marvin also found great comfort in music therapy, describing it as “life saving” for Noah.
“A harpist would come in and play soothing tunes that would help our anxiety,” Tonya says. “The amazing part is that we could visually see Noah’s blood pressure on his arterial lines improve while music was played.”
Further on in Noah’s journey, creative and expressive arts therapist Kory became “Noah’s person,” lightly strumming her guitar while Noah needed something at bedside, singing to him afterward to help calm and clear his mind.
Continued Care Away From Home With a Team of Support
Throughout the years, and through countless exams, procedures, and specialists, Noah has received multiple diagnoses, including a rare disease known as Alagille Syndrome, a hereditary gene mutation which is likely the cause of his heart condition. This mutation also affects his liver, heart, eyes, face, skeleton, blood vessels, kidneys, and lungs, and also causes dry skin.
Noah and family continue to travel the six hours from West Virginia to UPMC Children’s for Noah’s ongoing care, which now includes speech therapy, physical therapy, occupational therapy, and wheelchair fittings.
Now a spunky 6-year-old, Noah loves watching his favorite shows, recording himself and replaying his own videos over and over, spending time playing outside, and making people laugh.
“Seeing Noah play and communicate in his own way, including being very opinionated is a huge blessing, especially knowing where he was during his first year of life,” Tonya says. “The care that Noah was given in 2016 at UPMC Children’s literally saved his life. I know without a doubt if God hadn’t led us to this hospital when He did, our lovable, happy, Noah wouldn’t be here, and I am forever grateful.”
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