If you ask 12-year-old Tyler why he’s in a wheelchair, he might respond by saying “shark attack” – a story he can get some of his peers to believe. But the real story is that Tyler has spina bifida, a birth defect in which the bones of the spine fail to develop properly, leaving an opening in the spinal cord. Without these crucial connections, it’s hard for the spinal cord to send messages to and from the brain, affecting the body’s ability to control movement, as well as regulate body temperature, pain and touch.
Tyler has had 34 surgeries and spent more than 100 days in Children’s Hospital Colorado. He’s persevered through these medical challenges with the help of a compassionate and talented care team, a good sense of humor, and, of course, lots of chocolate cake.
“About 1,500 babies are born every year in the United States with spina bifida,” explained Tyler. “It can cause problems in every system in your body, so you need a lot of doctors. And I think I have the best doctors and nurses at Children’s Colorado – they do things like come into my room wearing funny hats and glasses to help me smile.”
The staff at Children’s Colorado go out of their way to make Tyler laugh. They provide activities that keep him entertained and divert his attention from the pain he often experiences. They also involve Tyler’s family in his care, because they understand that treating complex medical conditions is a team effort.
“The staff will take into consideration – and sometimes change the plan — based on what we think is right for Tyler and his situation or circumstances,” said Tyler’s dad, David. “It has been really helpful to be able to say what we feel, knowing that it’s valued and heard and that action will be taken based on our input.”
Today, with the help of donors, Children’s Colorado is making strides to help children with spina bifida before they are even born. Through groundbreaking technologies, this birth defect can now be corrected in-utero by patching the opening in the spinal cord – all while the baby is still in the womb. This corrective surgery significantly reduces the risk of future complications from spina bifida.
Renowned fetal surgeons at Children’s Colorado have successfully performed dozens of these in-utero procedures with some of the best outcomes in the nation. In 2015, the Colorado Fetal Care Center at Children’s Colorado became the first in the world to use 3D printing technology to fabricate the corrective patches used to close the spinal cord opening prior to the surgery. Each patch is unique to the patient based on computer models assembled from a fetal MRI. The prospect of curing spina bifida before a child is even born – avoiding dozens of future surgeries – was once just a dream for families like Tyler’s. Now, it is now becoming a reality for babies diagnosed with spina bifida.
When patients come to Children’s Colorado, they receive excellent care from a comprehensive team of experts. Patients with spina bifida have access to a multi-specialty clinic including rehabilitation and physical medicine specialists, orthopedic surgeons, neurosurgeons, urologists and geneticists. Physical therapists, wheelchair vendors, psychologists and social workers also work together closely to meet each patient’s unique needs.
Giving to Children’s Colorado ensures that kids like Tyler can continue to receive outstanding care. Today, he is an active sixth grader who loves swimming, playing basketball and, most of all, making others laugh.
“I love Children’s Hospital Colorado because of the people who help me and other kids to be healthy,” says Tyler. “Thank you so much for giving to Children’s Colorado.”