While anxiously awaiting the birth of their son, Linda and John had no idea that they would soon find out he had spina bifida. Spina bifida is a birth defect in which the spine does not completely wrap around the spinal cord, leaving an opening in the spine. A short 14 hours after his birth, their precious newborn was undergoing surgery.
Spina bifida can cause several other health problems too, including hydrocephalus. Hydrocephalus is a buildup of cerebrospinal fluid in the brain. Unfortunately, Jonathan would also need a shunt to help drain this buildup of fluid.
The long medical journey ahead with spina bifida
Jonathan’s parents felt overwhelmed. They didn’t know anything about spina bifida. They didn’t know how to navigate the health system that would soon become a big part of their lives – a reality that quickly became apparent.
At 14 days old, Jonathan started going to the Spinal Defects Clinic at Children’s Hospital Colorado. At 6 months, his shunt failed and he needed to return to the hospital. Their worries were eased, however, by the doctors and staff in the Spinal Defects Clinic who took the time to answer their questions and give them the help and guidance they needed.
Jonathan also had other health problems caused by spina bifida, including neurogenic bladder and fecal incontinence. Neurogenic bladder is a lack of bladder control, which is caused by nerve damage. Fecal incontinence is the inability to control bowel movements.
Their home away from home
It’s now been 23 years since the family has been going to Children’s Colorado. Over the years, Jonathan and his parents have formed special relationships with his doctors.
“This is a home away from home for us,” said Linda. Doctors like Michael Handler, MD, Gaia Georgopoulos, MD, and Pam Wilson, MD, had walked alongside them throughout Jonathan’s life.
The multidisciplinary care difference
One of the many things that Jonathan’s parents appreciate about the care that Jonathan has received at Children’s Colorado is the ability to go to only one place for his medical care. Jonathan’s appointments are scheduled at the Multidisciplinary Care Clinic, where all his doctors come to see him during his appointments. Not only is this approach convenient for the family, but it also provides continuity of care for Jonathan.
“We can freely discuss his situation with all his doctors all the time,” says Linda.
A change in Jonathan’s health
To manage Jonathan’s bladder and bowel health problems, he needed to follow a bladder and bowel management program, which was managed by Duncan Wilcox, MD, a urologist from the Urology Department. John and Linda gave Jonathan enemas at home, which became difficult for Jonathan as he got older.
For many years, Jonathan had been doing well enough to travel with his family back and forth to Cambodia, a place that was very special to them. They traveled there to manage an orphanage they founded in 2005 to care for children who are HIV positive. After all the medical issues Jonathan had experienced, he had become passionate about helping children with medical problems and enjoyed going there with his family to help out.
Unfortunately, Jonathan started having new symptoms he didn’t have before, such as tingling in his arms and hands, chronic fatigue, weight loss, chronic pain, nausea and vomiting. These symptoms affected his life dramatically. He quit enjoying social activities and found it difficult to keep up with his day-to-day routine.
"I just wanted my life back."
The Malone procedure
It turned out that his bowel management program was failing. Drs. Wilson and Wilcox both recommended that Jonathan have a Malone procedure, also called the antegrade continence enema (ACE) surgical procedure or MACE. The Malone procedure is an alternative way of giving an enema. An enema is usually given by inserting a tube into the rectum.
During this surgery, the appendix is used to create a tube through which an enema is given. This small tube is used to make a tunnel from the outside of the abdomen to the colon. The stoma (opening) is positioned either on the lower right side of the belly or at the belly button. A valve is created in the stoma so stool will not leak out of the opening.
The Malone allows a person to give their own enemas while sitting on the toilet. This procedure would enable Jonathan to give himself enemas, which would greatly increase his independence.
The decision to move forward with the Malone procedure
Jonathan was tired of feeling bad. He wanted to be able to go back to enjoying life. He wanted to be able to travel to Cambodia again to help his parents at the orphanage. He was starting to wonder if he would ever be able to go there again.
Jonathan decided that the Malone procedure would be the best treatment option for him. His parents gave him their full support.
Jonathan and his parents informed Dr. Wilcox that they decided to move forward with the Malone procedure. Dr. Wilcox left the exam room after the visit and to their surprise, he soon returned with Andrea Bischoff, MD, a renowned colorectal surgeon. They were fortunate enough to get a consult with Dr. Bischoff that very day because she was at the clinic and available to speak with them.
Dr. Bischoff made some changes to his enema regimen and performed the Malone surgery a month later. Jonathan and his family were impressed with how smooth his surgery and recovery were.
Excited about the future
After undergoing the Malone procedure, Jonathan is excited about the future. “I feel like I got my life back – significantly,” Jonathan said. He’s especially excited about going back to Cambodia to help at the orphanage. He also talks about wanting to volunteer at Children’s Colorado. Linda shares, “Every time we come to the hospital for Jonathan’s appointments, he tells me ‘We need to volunteer here mom.’”
When asked about how he’s dealt with his ongoing multiple health problems, he says he believes a sense of humor really helps when you’re struggling. He enjoys joking around with the nurses and making them laugh.
One of Jonathan’s healthcare providers, Julie Schletker, NP, shares, “I would be hard-pressed to find another individual who is as kind and passionate about helping others as Jonathan. His smile and warm demeanor are infectious and inspiring. We would all be so lucky to have his zeal for life and altruistic spirit.”
Words of wisdom from parents of a child with spina bifida
Jonathan’s parents have also come a long way, from not knowing what spina bifida was or how to care for a child with spina bifida, to being able to tell how Jonathan is feeling just by looking at him. They’ve learned so much about the condition, its health complications and treatment options.
They say they owe much of this knowledge to Jonathan’s healthcare providers who have empowered them to be part of Jonathan’s care team. Jonathan’s parents shared how the healthcare providers at Children's Colorado took the time to educate the family every step of the way, making sure they were involved in medical decisions and taking the time to listen to them. They provided a level of care that ultimately won over Linda and John’s full trust. “The doctors genuinely care about us, and give us messages of grace and love,” said Linda.
When asked about the advice they’d give to other parents, Linda and John say that parents should always ask questions. “Knowledge is power. Your child can not only survive but thrive,” they shared confidently. They believe a supportive healthcare team, involvement in Jonathan’s healthcare and their faith have helped Jonathan thrive.