Spina Bifida Clinic Helps Family Focus on Child’s Abilities, Rather Than Disability
The first time Steven and Renee Mayher saw a photo of their daughter, Hannah, they knew she would be a part of their family.
“We made a call on a Monday, and she was home by Friday,” Renee says. “It was like she was always here.”
Since being “home” for the last two years, Hannah, 9, has had a world of opportunities open up for her. Born with spina bifida, Hannah was adopted by Renee and Steven Mayher at age 7 and is now one of eight children ages 2 to 23 in this St. Louis-area family, several of whom have special needs. The Mayhers have a niece with spina bifida, so they understood the challenges Hannah was facing.
“All of our children are such a blessing,” says Renee, who along with her husband have two birth children, five adopted children and one foster child waiting to be adopted. “It’s so much fun and we love each and every one of them. They’ve made a difference in our lives.
And the Mayhers have made a difference in Hannah’s life thanks to the support they have found through their community, Missouri children’s division through her adoption, the Rockwood schools, organizations like Variety and the Spina Bifida Clinic at St. Louis Children’s Hospital.
“Our faith is an important part of our support system for our family and in Hannah’s life,” Renee adds. “Hannah’s amazing dad and my super husband, along with her brothers and sisters, help Hannah be successful in all she endeavors to do.”
One of the first things the Mayhers did after Hannah joined their family was take her to St. Louis Children’s Hospital because they were uncertain of her long-term diagnosis and if she’d have a chance to walk or have the independence so many children count on.
“We were told at the very beginning by the doctors and nurses that they were very hopeful for her success,” Renee says. “St. Louis Children’s Hospital has meant so much to Hannah. I don’t think if we lived in another place we would have found this type of compassionate care and support for her.”
The Spina Bifida Clinic provides the Mayher family both a sense of security that they are able to address all of Hannah’s health-care needs, as well as a convenience factor they might not have somewhere else.
“Thanks to the clinic, we can see so many doctors and therapists all in one visit,” says Renee, adding that the clinic manager helps remind her of all necessary appointments and helps Hannah get into see others even at the last minute. “We are able to do all of our appointments at one time and get additional support such has help from the wheelchair specialist when needed. The clinic helps take away the worry.”
With more than 17 surgeries during her lifetime, Hannah has faced many challenges. Since becoming a part of the Mayher family, she has had five of those surgeries.
Her last urological surgery made it possible for her to no longer need diapers and gave her a new independence, Renee says.
“Before her surgery, she was a little nervous, and since we were at the clinic we were able to stop by Dr. Paul Austin’s office, pediatric urologist with the Spina Bifida Clinic, and his nurse took the time to talk to her and reassure her,” Renee recalls, adding that it’s moments like that which make Children’s Hospital so important to the family.
“The hospital and the clinic have been so accommodating and everyone so compassionate,” she says. “Sometimes it’s just the little things like a smile or visit to the rooftop garden. Hannah has a real connection to her doctors, nurses and therapists. She is not a number.”
Another milestone for Hannah has been the ability to walk with forearm crutches. She uses a wheelchair when she has to cover long distances, but her crutches have offered her the chance to do something her mom says she never thought would be possible.
“All of these moments mean so much to Hannah and our family,” Renee says. “We don’t want the focus of our children’s lives to be on their disabilities, but on their abilities.