Nine-month-old Brody McInturff has an infectious giggle and greets everyone with a smile.
Brody’s parents, Daniel and Lauren McInturff, describe their son as laid-back, easy-going, and “a Superman.”
Born with the rarest and most severe type of spina bifida, Brody lives each day with a congenital birth defect where the spinal column does not completely close and cover the nerve fibers.
Brody was born on Jan. 6 at Vanderbilt University Medical Center, where it was confirmed he had myelomeningocele. He has no feeling or movement from his hips down and has already undergone two major surgeries; a spinal repair when he was 12 hours old and a procedure to relieve hydrocephalus on June 20. Hydrocephalus is the build up of brain fluid.
“God had blessed him with his personality,” Lauren said. “He goes to therapy three times a week. He just does whatever they want him to do.”
He has slept through the night since he has been home, Lauren said, “in his crib when I let him.”
“I like him to be with us,” she added. “He has only had one bellyache. All of the ‘normal’ stress you would have with a baby, we haven’t had to deal with. He is perfect.”
Now, at nine months old, Brody enjoys playing with his favorite toys and rolling around his house in his ZipZac, a toddler-sized mobility device designed specifically for toddlers who have disabilities. The family was able to buy the ZipZac through a community fundraising effort that was started after Brody’s story was shared through churches, family, friends and social media sites.
The McInturffs say this community support has helped them handle all of the challenges that have come their way in the past months.
Lauren, a teacher at Unaka High School, said they learned Brody would likely be born with disabilities when she was 16 weeks pregnant.
After a visit to her obstetrician for a regular checkup, a test showed Brody likely had spina bifida, but the predicted outcome had been much more dire. Lauren said they had been told he would probably be born unresponsive and would remain in a vegetative state and would need a feeding tube.
“We found out on a Wednesday, and that night both of our families met and prayed for him,” she said. “We told our churches and they put him on the prayer lists and the prayers started from there.”
The next morning, the couple visited a specialist in Johnson City who told them the case would not be as bad as first predicted and referred them to Vanderbilt for the rest of the pregnancy.
“What I felt best about, was he told us he wanted to send us to Vanderbilt because he felt more comfortable with us going there,” Daniel said.
At Vanderbilt, they learned Lauren might be a candidate for a fetal surgery where doctors would surgically close Brody’s spine while he was still in the womb. Lauren would have remained on bed rest for the remainder of her pregnancy. However, further testing showed she was not a viable candidate for the surgery because of the high risks to both her and the baby.
Lauren traveled to Vanderbilt on a regular basis until she had to stay there beginning Dec. 26 until Brody was born Jan. 6.
From the time Brody’s story started circulating, the couple says they have received numerous acts of support from the community that has helped them financially handle the situation.
Lauren said people brought meals, groceries, clothes and diapers, formula, gift cards and other necessities along with monetary contributions to help the family through the tough time.
“If we hadn’t gotten these donations, I don’t know how we would have done it,” Daniel said. “I really don’t.”
Lauren said they received cards with money included from friends of friends, or people they didn’t know at all. Local churches would take up donations or love offerings to send to the family to help with the expenses of traveling to Nashville every six weeks. Kari’s Heart Foundation gave the family a care package with a gas card and a gift card along with supplies for labor and delivery.
“Money is so precious these days, and to just hand someone who knew someone who knew us a card with $100 in and have faith it would get to us was amazing,” Lauren said. “Just the trust that people put in us that I had never met, and they trusted us that we would put this to what we needed.”
Lauren’s co-workers in the Carter County School System also donated their own personal and sick days to give Lauren more than 100 days so she could miss work to be with Brody after he was born and to help care for him after.
“I don’t know how it got started. Principals at their schools had a staff meeting and shared the gist of what was going on,” she said. “They said we didn’t know the outcome of what would happen and after he was born I would need days to spend with him.”
The couple says they are thankful for all the help they have received and wanted to share that with the community.
“You can send thank you cards but you don’t know who you will miss,” Daniel said. “We don’t want the community to think we are not appreciative of everything they have done. There is no way of thanking everyone.”
After returning home with Brody, the couple learned he had been denied for disability and for TennCare Select because they did not meet the income requirements. In addition to Lauren’s job as a teacher, Daniel works as a probation officer.
“They say it is income-based,” Lauren said. “I am a teacher. He is a probation officer. We don’t make that much money.”
Daniel said the family has contacted lawyers to try to change the ruling but have been told there is nothing the family can do.
“We stress that to people,” he said. “The thing about spina bifida and Brody’s situation is it is not going to get any better. Medically, he will never be OK. In our eyes, he is fine. We have called lawyers, and we are handcuffed. It is not that we want handouts. We don’t. We just want to be able to provide for him the best we possibly can.”
Over the years, Daniel said Brody’s needs will change as he grows. He said the older and bigger Brody gets, the family will need to make changes to the home to accommodate his needs, such as accessible bathrooms and kitchen fixtures.
“He won’t be able to use a normal shower or a normal sink or a normal pantry,” he said. “The thing is, that is your livelihood and I don’t think that is taken into consideration.”
One of Brody’s needs that was not covered by insurance was his ZipZac mobility device. Lauren said that the doctors would like for him to be in his normal wheelchair by the time he is 1 year old, but when he is in the chair he is taller than where his toys are. Brody is covered by Lauren’s medical insurance for most things.
She said she researched and found out about the ZipZacs, but also learned they were $2,800 and would not be covered by insurance. Lauren was able to locate one on sale for $900.
Daniel’s mother works at the Carter County Courthouse and when word spread about Brody’s need for the ZipZac, another employee collected $900 so the family could buy the device for Brody.
“She called Daniel at work and asked if he could come by on his lunch break,” Lauren said. “She hands him a card with a bunch of people’s names on it and $900 cash and said ‘Go order a ZipZac.’ Every time I think about it, you know he is touching people’s lives. We are not deserving. We are not active in the community. We don’t do anything out of the ordinary and they take it on themselves to help out.”
The couple says Brody will not have developmental delays from the spina bifida, and he has reached all of his 8-month milestones except for the ones that involve his legs.
“As bad as his situation is, he is so far ahead,” Daniel said. “He has so much drive and willpower. He has already figured out he can roll and get places and on certain floors he pulls himself. He knows that if something is in front of him and he wants it, what he has to do to get it. We know we are biased because he is our child, but still for not even nine months yet, it is amazing the things he is capable of doing. He is smart.”
The day the Star visited the family, Brody was dressed in his Superman shirt, something Lauren said matched her son perfectly.
“It was so fitting,” she said. “He is a little Superman.”