From “hello” to “I will never be the same without you,” the Tisdale family from Michigan have watched their 4-year old ‘Mighty Miss Maya’ born with cerebral palsy take her first steps after a special surgical procedure.
Maya Tisdale standing with her crutches. Photo credit: Ann Tisdale
Approximately 4 million American women give birth each year and on any given day there are more than 10,900 babies born. A short report published in The British Medical Journal stated that preterm births in the US have been on the rise.
Maya was one of thousands of American born preterm babies the year she was born. At 26 weeks, nearly four months early, she weighed 1lb, 10 oz.
Maya’s brothers Wes and Jack were 4 and 10, respectively, when she was born. When their eyes met with hers they knew their connection would be more than friendship. The boys may have been too young to understand the enormity of their little sister’s condition but what they did understand was love.
“I think Jack understood that she was very sick. I don’t think Wes really understood. He just knew that she was in the hospital,” said Ann.
“She did really well for such a small micro preemie. That led us to kind of a false sense of security, because there were babies in there that were even a little bit bigger, a little bit older that were much sicker than she was,” said Ann.
There are many causes for preterm birth but in Maya’s case, her early birth was the result of intrauterine growth restriction (IUGR).
According to Lucile Packard Children’s Hospital Stanford, IUGR results when the fetus does not receive sufficient nutrients and oxygen for growth or development.
“I made it to about a little before 25 weeks and then my blood pressure started to climb and I was admitted to the hospital,” said Ann.
Doctors worked to manage Ann’s blood pressure knowing that any further increases could be deleterious to both baby and mother.
“They really didn’t have a choice. They had to deliver her and we just had to hope for the best outcome,” said Ann.
Maya spent three months in the neonatal intensive care unit (NICU) at Helen DeVos Children’s Hospital in Grand Rapids, Michigan.
She spent three weeks on continuous positive airway pressure (CPAP) ventilation to allow her to breathe.
She did very well during her transition home. “We had no reason to believe anything might be wrong.”
When we took her home, we were like, “Wow. It was really scary but she did so great.”.
Maya was developing normally. However, at 6-8 months Ann and her husband started noticing stiffness in Maya’s legs.
“She was getting some home visiting services that we have in our state for kids that have some delays that were born prematurely,” said Ann.
They urged Ann and her husband to have Maya assessed at their local Children’s Hospital.
“We had to wait for a while to find out if it was just a delay or if there was something else going on. The MRI did show that she had, what’s called PVL, periventricular leukomalacia.”
Maya was diagnosed with spastic diplegia cerebral palsy, a condition that only affected movement from her hips to her feet.
“It was really just affecting her lower extremities,” said Ann, “In that, we were kind of lucky.”
According to Cerebral Palsy Guidance, spastic diplegia is one of nine different types of cerebral palsy. Physical therapy has a role in decreasing muscle stiffness and improving mobility through walkers, braces and exercises.
“Cognitively, she doesn’t have any issues related to her CP,” Ann reported, “so she’s on track developmentally for speech and language.”
Many of the necessities that Maya needed were not covered by the family’s insurance. One of those being physical therapy. The insurers rejected the claims because they viewed cerebral palsy as, “a lifelong condition in which she was unlikely to get better.”
However, children with CP do improve and make gains in their mobility when given medical and physical therapy treatment.
“Financially, it has been a lot harder than we initially thought it was going to be,” Ann recalls, “I’ve had to jump in around here, but with Maya’s surgeries, she requires five times a week physical therapy post-surgery and our insurance won’t pay for that.”
Ann would stay up late trying to find different ways to get Maya the treatment she needs. She came across selective dorsal rhizotomy (SDR) surgery at St. Louis Children’s Hospital.
The hospital had their own Facebook page for other families that had the surgery done. Many others had said, “This surgery changed my child’s life.”
Ann quickly learnt that there were many other families focused on getting their child to walk independently too.
“For us, the SDR was a way to enhance the quality of her life because, like I said, we didn’t want her to have to go through multiple surgeries. We wanted her to live a life without chronic pain.”
Many of Maya’s doctors were opposed to her having the SDR surgery.
“My husband and I really had to push them and really had to advocate for Maya.”
Some of the doctors thought that she was too young. Ann and her husband began looking into SDR when she was 2-years old.
Others have said, “I don’t think she’s strong enough. She’ll be too weak after the surgery. She won’t be able to do some of the same things that she can do now.”
Dr. Tae Sung Park from St. Louis Children’s Hospital recommended that ideal timing is between the ages of 3-6-years of age. Children would have better recovery outcomes since they do not have a lifetime of chronic issues and the brain can rewire itself to learn new movement patterns.
Ann and her husband had been overwhelmed with information from doctors. They decided to speak with Maya’s physical therapist. Initially she was opposed when they brought the idea of SDR for Maya.
“Over time, I don’t know if we wore her down or we just brought her enough information, she really turned around. Honestly, now, she’s been so blown away by Maya’s results from the surgery,” said Ann.
Maya’s physical therapy team have not had any SDR patients before but they were willing to learn how they could help with post-surgical recovery.
The video of Maya standing and walking for the first time went viral. As she took her first step she says, “I’m walking!”
I asked Ann how she felt when she saw Maya walking for the first time to which she responded, “We were just really stunned by that because she’s never taken any independent steps before. We knew that post-surgery, it could take a year or more for her to be able to be strong enough to take any independent steps. We were obviously very shocked.”
The video was part of Maya’s home exercise routine which she does twice a day. Ann had the camera on so that she could save any new movements that Maya could now do.
“My husband noticed that she looked really stable. He was the one that just prompted her to, ‘Maya, see if you can move your left leg just a little bit, and then move your right leg.’”
The look on her face made everything worth it.
Prior to the surgery she could only stand for 30 seconds.
Fill your life with people who see your value, your beauty, your potential and remind you of it everyday!
Maya is currently 4-years old and thus not cannot comprehend celebrity status. People will say to her, “Maya, I saw your video.” Her response would be, “Okay.” The fame is not a big deal for her. For the family, seeing the video go viral was exciting to see as it had an impact on so many people around the world.
The family had a Facebook and Instagram page before Maya had the surgery purely to keep extended family updated. However, social media was more than just staying in contact.
“I started the Instagram a while ago because I was having a hard time finding families that were going through the same thing that we were locally just to connect with, said Ann. “ I started that because I needed support from other families. I needed information. I wanted to know what else was out there.”
After the video went viral, Ann and her husband felt like they were in a position to pay it forward and help other families who have a child with CP.
Although elementary school is still a few years away, Ann and her husband have already started to consider how she will make that transition. Currently, Maya attends pre-school a few days a week.
“When you’re a child, has mobility issues, there’s a lot to think about in school. It can be hard for her to keep up with the other kids. They try as hard as they can to adopt things and make things inclusive for her,” said Ann.
However, difficult life gets there is always something within your control to allow you to succeed. Maya’s parents were her biggest advocates. They were assertive with health professionals and encouraged them to take a second look at treatment options that would allow her to walk. There is no disability, adversity or dictionary in the world that could ever define you as a person. Surround yourself with people who love you, cheer for you and believe in the power of your dreams just as much as you do. Here’s to Mighty Miss Maya and all the wonderful things she will achieve in the future!
The Tisdale family are aiming to raise $50,000 for Maya’s physical therapy. They are little over half way. You can help them reach their goal by donating on their Go Fund Me page.
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