Caregiver Story: Mother Faces New Challenges as Daughter with Life-long Disability Becomes an Adult
Patti is the mother and caregiver of her daughter Mary, born with Spina Bifida. As a new mom, she was thrown into a world so unknown to her and her husband. It was full of medical terms she knew nothing about, constant doctor’s appointments for her young daughter, and fear. She was afraid of what the future would look like for Mary.
Spina bifida is a condition that affects the spine at birth. Children born with Spina Bifida are almost always found to have a neurogenic bladder. This is because the nerves in the spinal cord that control the bladder did not form properly. This means the bladder will have trouble storing urine, emptying or both.
Almost right after birth, Mary could not empty her bladder on her own. Patti and her husband had to start catheterizing (a procedure to drain the bladder and collect urine through a flexible tube called a catheter) her every 3-4 hours to keep her kidneys healthy. Mary had a pediatric urologist whom she saw on a regular basis, along with many other doctors. As Mary grew older, Patti had to think about moving Mary’s medical care from pediatric to adult.
Patti never gave up. She did her research. She brought a notebook to all of Mary’s appointments, but wished she had started asking questions about transition care earlier – like around age two. Looking back, she wished she had asked what the future was going to look like for her daughter’s urologic care as an adult or if there were surgeries to make catheterizing easier. What she knows now, she shares with others in her local Spina Bifida community, in the hopes that they can learn from her and Mary.
Mary’s pediatric urologist suggested she start moving to an adult urologist at age 14. Patti asked questions. Never shy, she was a constant advocate for her daughter’s care. She asked for doctor recommendations, she did her research and she reached out to her local disability community to learn where to go next.
Good communication with Mary’s primary care physician and the network of doctors who knew Mary’s unique condition helped ease the move to adult urologic care.
At the start of Mary’s life, Patti was worried about the many health challenges Mary would face in her lifetime, but with the support of Mary’s doctors, her family and the community, the light at the end of the tunnel got bigger and bigger. Patti knows that as a caregiver and mother, every day is something new. The journey is always a struggle to keep Mary happy and healthy, but is also full of immense joys.
To hear more about Patti’s story, listen to the full podcast episode below.
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