SALT LAKE CITY — A lot of spunk and spirit. That is what you feel instantly when you step into a room with 9-year-old Madison Newbold.
“She is this sassy, bossy, tenderhearted kid,” said mother Emily Newbold.
Madison’s parents said from day one she’s always had her own distinct personality — almost as if she’s always known she is special.
When Madison’s parents, poor college students at the time, found out Emily Newbold was pregnant, they were ecstatic. The first-time parents went to their 20-week ultrasound appointment excited to find out whether they were going to have a boy or a girl. They never expected what they heard instead.
The ultrasound revealed their baby would be born with spina bifida and hydrocephalus. The excitement for a new baby instantly changed.
“It turned from this beautiful talk of pictures of the baby and pictures of her fingers and her toes and her cute little face to all of a sudden … it’s a 'fetus' in case, they brought up, did you want to terminate the pregnancy,” said father Ben Newbold.
The Newbolds never considered that. But they did leave the doctor’s office with knowledge that their parenting journey would be vastly different from those around them.
It turned from this beautiful talk of pictures of the baby and pictures of her fingers and her toes and her cute little face to all of a sudden … it's a 'fetus' in case, they brought up, did you want to terminate the pregnancy.
“I think one of the best things we heard, you know, post-diagnosis and pre- Maddie’s birth was (from) one of the social workers from Primary Children’s,” recalled Emily Newbold. “She said, you know, when all of this finally happens you’re going to be so grateful you’re having a baby and not a birth defect.”
Even before Maddie was born, her parents started to get to know the doctors and staff at Primary Children’s Hospital who would play vital parts in their daughter’s life.
“They came in and made sure we were knowledgeable about what was going on,” said Ben Newbold. “It definitely takes an edge off to know what’s going on, what’s likely going to happen throughout her life and to at least feel a lot calmer about the unknowns.”
At the time, some of the unknowns associated with the hydrocephalus, or liquid on the brain, was whether Maddie would ever be able to function on her own.
Fast-forward nine years and it’s clear she functions just fine.
Swimming, basketball, tennis and dancing — they’re all favorite things to do for the spunky girl. And, on being the oldest of three kids, Maddie was quick to say with a wink and a smile, “It’s great because I get to help out with everything.”
This fourth-grader doesn’t focus on what she can’t do, but rather on what she can do. And a lot of that independence is a result of a risky procedure performed on her when she was almost 2 years old.
“(The doctor) talked to us about doing a procedure (using) VEPTR rods … and they’re essentially one rod on each side of her spine,” Emily Newbold said. “His theory was since her spine was still young and forming, that he could maybe stretch her spine and reduce the curvature without doing really intense surgery.”
It was a procedure that had never been done before on a child with this type of spine curvature.
After the procedure, Emily Newbold said the surgeon and nurse came out with huge grins on their faces and said it went better than even they expected.
“She went from over 60-degree curvature to less than 30 degrees,” Emily Newbold remembered. “And when we went back to see her, she was so tall! They were able to stretch her at least 4 inches.”
Within a few hours, Maddie could sit up. She could breathe easier. And she could be just like her peers.
You know, nobody plans for their child to be in the hospital. But our journey is different now and we have benefited so much from those people who donated before. It's just so important for those donations to come in so that families like us and so many others can receive the help and support they need.
Her parents call Madison their miracle. And they never regret the choice they made to put their child’s life in the hands of the doctors and staff at Primary Children’s. They said they recognize the care there is a result of hard work by staff and the community.
“You know, nobody plans for their child to be in the hospital,” Emily Newbold said. “But our journey is different now and we have benefited so much from those people who donated before.”
“It’s just so important for those donations to come in so that families like us and so many others can receive the help and support they need,” Emily Newbold said.
After Maddie battled a serious infection last year that put her in the hospital for several weeks, she’s now home and doing well. Her parents appreciate each day they’re not in the hospital. And, with no surgeries on the horizon, they’re celebrating their healthy, happy girl.
“Just having her grow up and prove people wrong time and again has been awesome,” Emily Newbold said with a smile. “Life is different, but life is good.”