We decided that we needed one more child and started trying in 2016. We got pregnant at the beginning of 2017. We were so excited and so were our other children. We really wanted a boy and Russell said he wanted to name him Hunter. We knew from the beginning that was our goal. A boy to take fishing and hunting and enjoy the outdoors.
Things changed when we went to our 5-month ultrasound. I went alone and Russell stayed at work. It was just a normal ultrasound and I found out we were having a boy! But after she was finished, she asked me to go to another room to talk to the doctor. I was not expecting that. The doctor came into the room and told me that they couldn’t find the baby’s stomach and his brain did not look normal. They referred me to a doctor in Springfield that could do further investigation.
So, we went to that doctor and spent seven hours at the office deciding that we needed to do an amniocentesis. But we did and, because of the results, they referred us to St. Louis Children’s Hospital. I started going there once a month and my normal OB once a month until I was about 7 months along. Then I was going to St Louis every other week and Springfield the opposite weeks getting 3D ultrasounds watching Hunter’s development.
My delivery was scheduled so that Hunter could have the care he needed upon birth. At 40 weeks gestation, on January 8, 2018, Hunter was born with about twenty medical staff in the room. Hunter was taken immediately to cardiac ICU. We knew there were complications, but we prayed for a short NICU stay. We also hoped for very few surgeries for Hunter. Unfortunately, he was born with a TE fistula. His fistula was not connected correctly causing him to pull fluid to his lungs; an emergency surgery was needed right after his was born.
Further testing showed that Hunter has CHARGE syndrome, which is a mutation of the CHD7 gene that results in multiple medical concerns impacting everything down the center of the body: eyes, ears, brain, throat, heart, digestive and genital issues to name a few. The newborn screening revealed that Hunter was also born without a Thymus. This means that he had no immune system whatsoever – this is rare in CHARGE children, but not impossible.
Without a thymus, no one could be around Hunter without mask, gloves and gowns; and he cannot be in public. Eventually we were sent home, but Hunter was to remain isolated. The only time he’s ever left home was for the doctor.
On Angels’ Wings was with us from the start. A photographer did my maternity pictures and Hunter has had pictures at least once a year — I couldn’t be more thankful. All of our extra money goes toward all these doctors’ appointments (including travel expenses), Hunter’s needs and caring for our other children. Pictures just weren’t even an option, but OAW has helped us capture times of joy in our journey.
Hunter having CHARGE syndrome affects him everyday. He can’t communicate like we can and he doesn’t have the same physical milestones of a child his age.
Thankfully, April 24, 2020, Hunter received a thymus transplant in North Carolina. Approximately 200 children have had a thymus transplant since 1997, a concept that has been studied and developed by Dr. M. Louise Markert at Duke University. They take a thymus tissue from babies under nine months old who undergo heart surgery and they have to remove the thymus to get to the heart and the parents agree to donation. The tissue undergoes testing and passes certain criteria for use in transplant.
Today he has active T-cells; not enough for a full immune system, but he is on the right track. We still have to live in isolation; Few people come to our house and when anyone comes near Hunter they need a mask. He is walking with a walker and playing with toys now. He has learned some sign language too!
Hunter is a happy boy! Sometimes he doesn’t want to be touched; other days, he’s all cuddles. He’s always smiling and laughing!
One day I hope to take my son to a park or a zoo. Even going to the grocery store with him would be a treat for us both! One day I hope that we can have a whole family together on an outing. My hopes and dreams are for as normal of life as possible for Hunter: to do things on his own and even eat by mouth.
By Victoria Burton
Mommy to Hunter
