Local family copes with child’s rare diagnosis
By Nancy Edwards
Like many girls her age, 12-year-old Mia Carter is an active, happy, independent child who enjoys school, her friends, running, swimming and biking.
The seventh-grader at Fishers Junior High School also likes doing crafts, writing stories and baking, and is known for making young children laugh as she pushes them around on their toys.
On Thanksgiving morning, Mia’s entire life changed in a matter of minutes. She woke up screaming in pain and called out to her mother, Isabel, who grabbed some Advil to soothe her daughter’s back pain. Mia, never one to ask to see a doctor, surprised Isabel by demanding to go to a hospital.
In the few minutes it took Isabel to explain to Mia’s sister what was going on and prepare to leave, Mia had already collapsed on her way down the stairs, unable to walk.
“I asked Mia, ‘What do you mean you can’t walk?’” Isabel said. “When I’m at the doctor’s with my kids, everything’s always fine.”
Upon arrival at the emergency room, Mia had an MRI scan performed, which showed a blood clot pressing on her spinal cord, causing paralysis from the chest down. Mia was immediately transferred to the Peyton Manning’s Children’s Hospital at St.Vincent, where a three-and-a-half hour surgery was performed to remove the clot.
After surgery, the diagnosis came in: Mia had spinal Arteriovenous Malformation, an abnormal tangle of blood vessels on, in or near the spinal cord. In a spinal AVM, blood passes directly from the arteries to the veins, bypassing the capillaries. This blood flow disruption causes cells in the spinal tissues to deteriorate or die.
“There was nothing she did to cause this condition,” Isabel said. “She was born with it. The malformation can occur in any part of the body; hers happened in the neck.”
Mia underwent a second surgery to stabilize her neck, which was successful. A few weeks later, she was well enough to move out of the ICU. However, she still needed intense physical therapy and was transferred to Cincinnati Children’s Hospital, where her needs could best be met.
Although Mia remains paralyzed in both legs and her right diaphragm, physical therapists at Cincinnati Children’s Hospital have been working with her over the past month. Her upper body strength has improved, but she must use a bi-pap machine to help her breathe at night because her lungs are partially collapsed and she needs ongoing breathing treatments.
After a physical therapy session several weeks ago, Mia’s therapist asked if she could wheel herself down a hallway. Though Mia replied that her arms hurt and she did not want to attempt to roll her wheelchair, Isabel decided to wait outside the hospital room and told her daughter she had all day to wait for Mia when she was ready to try.
“I sat and she rolled herself down the hallway,” Isabel said. “She’s a strong person; when she says she’ll do something, she’ll do it.”
Mia can now feed herself, pull a shirt over her head and even braid her long hair. “She is willing to go on,” Isabel said.
“Almost immediately after Mia had surgery (before being transferred to Cincinnati), her first words were, ‘Can I go to school Monday?’” Isabel said.
Mia is scheduled to arrive back home on Jan. 31. Her mother and two siblings, Dominique, 15, a student at Fishers High School, and Joaquin, 8, a student at Cumberland Road Elementary School, are anxious for her return, as are Mia’s friends. In the meantime, Isabel has a lot to do to prepare for Mia’s return. The family is currently living at Isabel’s sister’s home, which is not wheelchair-accessible. Isabel is currently working part-time and will need to ensure that Mia’s needs are met when she returns.
“Isabel’s immediate needs include a home for her and her three children and a wheelchair-accessible vehicle/van,” said Cynthia Neff, a friend of the Carter family. “In her current situation, finding and affording a home are going to be extremely difficult. We are hoping to raise enough funds to help make this possible. A ranch-style home, preferably with three or four bedrooms and a basement, would be ideal.”
Once a house is found, according to Neff, help is needed for necessary modifications such as wide doorways, an accessible bathroom/shower, wheelchair-friendly flooring and ramps.
In addition, the family will need help with moving expenses or a moving company willing to donate their services.
Isabel, originally from California, said she has received much support from the community, from cards and visits to Mia from her friends and those from the church the family attends, teachers and ER physicians, to help from her kids’ schools and neighbors in making sure all her kids received a happy Christmas.
“I think things happened for a reason; had I not moved here I wouldn’t have the support I have,” she said. “Things work out; it’s just getting there, it’s a tough road. (The community) support makes the road a little less bumpy.”
How to help the Carters: Cynthia Neff, a friend of the Carter family, has set up a web page for donations toward the family’s growing medical expenses. Any amount is appreciated. For more information, please visit http://www.youcaring.com/medical-fundraiser/mia-strong-/119425