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Marshfield's own 'Bubble Boy'

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Imagine: you take a pregnancy test, you’re holding your breath hoping with all hope that it’s positive and then the little plus sign appears. You cry tears of joy and nervousness and you know your life is about to change forever. You picture middle-of-the-night feedings, blow-out diapers, and watching your baby hit milestone after milestone. But what happens when the baby you’ve longed for isn’t the picture-perfect idea you had in your head?

“In 2016, Russell (my husband) and I decided we wanted to have another baby,” reflected Victoria Bruton, mom to (now) four-year-old Hunter Bruton. “It took us eight, almost nine months, and I was finally pregnant. I was so excited.”

“Russell told to me, ‘I want a boy and his name is going to be Hunter. I’m like, ‘ok we will see how it goes,” laughed Bruton.

“…at my twenty-week appointment, where they do your ultrasound and tell you the gender of the baby, the ultrasound tech left the room. You know the scary ‘I’ll be right back',” remembered Bruton. “And the doctor came in with her and they pulled me into another room. They told me that Hunter had no stomach…and that he was missing part of his brain.”

From the ultrasound, Bruton was immediately sent to a specialist. “For about eight hours we were in that appointment. They did an amniocentesis, they did 3-D ultrasounds and blood tests…all in that day,” reflected Bruton. “The doctor called us into her office and told us that Hunter had a stomach but it was very small and he had the Dandy-Walker syndrome in his brain.”

Dandy-Walker malfunction affects brain development, primarily in the cerebellum. The cerebellum coordinates movement. In people with Dandy-Walker typically there is no cerebellum present or it is very small and may be positioned abnormally. Abnormalities caused by Dandy-Walker syndrome typically result in problems with movement, coordination, intellect, mood and other neurological problems.

“They referred us to St. Louis. St. Louis Children’s Hospital started seeing me once a month. I was seeing my OB in Springfield twice a month. I had an appointment almost every week,” shared Bruton. “I was getting a 3-D ultrasound to check growth at every visit-you wouldn’t believe the collection (of photos).”

Bruton was scheduled to deliver Hunter in St. Louis.

“It was very emotional, but it was almost like it was so emotional you couldn’t react,” reflected Bruton. “I was still over the moon excited, we were super excited about Hunter regardless of his problems.”

Hunter was delivered and the doctors found more medical issues. During his first 24 hours outside of the womb, Hunter was resuscitated three times. Bruton was able to hold Hunter once and then she wouldn’t get hold him until he was two months old.

“A week after Hunter was born, a doctor came in and told the therapist that was in there talking to us, that she needed to put a gown and a mask on and that she’d be back at 3:00 with more information,” shared Bruton of the confusing announcement. “These two doctors came in…they told us that on the labs that they drew on Hunter came back and he had no T-cells at all, no B-cells at all. Which showed that he had no thymus tissue whatsoever to do anything as an immune system.” Essentially, on top of Hunter's other medical abnormalities, he had no immune system.

At that time there was only one option for a thymus transplant- a study that was taking place at Duke University in North Carolina. “We didn’t know if insurance would pay for it or if they would put him on a list for it,” shared Bruton.

Luckily for Hunter, he was able to be placed on the transplant list however, his list of medical abnormalities continued to grow from his ocular nerves to his heart. In addition, he failed his vision and hearing test leaving him legally blind and deaf. On top of that Hunter was required to live his life in full isolation-gloves, gowns, masks until the thymus transplant.

“It was super overwhelming,” reflected Bruton. “…every month…from the rest of 2018 and 2019 Hunter was inpatient for something.”

For the first two years of his life, Hunter was either in the hospital or in full isolation in his room with a full-time nurse. “Anybody that came into Hunter's room had to have a mask, wash their hands, and use hand sanitizer before they came in. I only allowed one person at a time,” explained Bruton. Despite the isolation, Hunter did hit milestones-he rolled over at 10 months, and now at four years old, he is crawling. He has a walker and a wheelchair.

Finally, in March of 2020-at the onset of the COVID pandemic, Bruton got the call they had been waiting for-Duke was ready to perform the transplant.

“We had to get a letter of necessity to travel to be able to go,” shared Bruton. “We had no choice but to drive because there was no other sanitary way to take him…we were super scared. We took a cooler with potted meat and bread. Russell and I ate potted meat sandwiches and chips the whole ride.”

Making no stops other than for gas, Bruton and her husband drove to North Carolina.

“It was crazy-the highways were completely empty with signs flashing ‘emergency travel only’,” reflected Bruton of the drive. “Hunter was the 110 thymus transplant-which is what they needed for the study. After Hunter's transplant, they shut down the lab, went through FDA approval and got everything approved.”

The transplanted thymus would take time to kick into action, it wasn’t until this year (2022) that the thymus began to do it’s job and in the last 6-9 months Hunter has slowly begun to build T-cells. Then finally, just last month (September 2022) the family got the call they had been waiting four years for.

“The doctor calls us... and said ‘hey, I don’t think you guys need masks anymore’.” explained Bruton. “ I said ‘what about taking him somewhere and she said ‘as long as there isn’t a known illness in that area I don’t see anything wrong with it’.”

“This was coming from the same lady that told me that my son had no immune system at all,” shared Bruton with a hesitant laugh. “We waited about a week and then we took him to Price Cutter. We waited until like 9 at night so that no one was there.”

Over the last month, the family has cautiously taken Hunter into public for short increments. “It’s scary for sure… it makes me really nervous,” shared Bruton. Despite all the fear, the family has hopes for Hunter's future. “Starting in December we will start his immunizations that he should have got when he newborn. Once he is caught up on his immunizations he should be able to go to school for three hours a day or so. That’s our goal.”

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