Patient Story: Deegan, Mr. Independent

By Erica Gadbois

Deegan and sister Kinslie

Looking at Deegan Marchi, you would have no idea the exuberant, Lego-loving, 9-year-old Heelys master once had to re-learn how to sit, crawl and walk; has gone through 17 procedures on his bladder and bowels; and will use urinary and fecal catheters for the rest of his life. His mother, Madison-Rae Clapp, says that facing medical adversity has made her son strong. “I’ve taught him to be pretty independent. I don’t want him to feel like an outsider … [he knows] it’s ok for him to be a little different.”

What makes Deegan unique began with a fever and severe headache when he was 3. Concerned he had meningitis, physicians at another hospital ordered a spinal tap — routine to rule out the potentially fatal infection. But when Deegan sat up, “he started throwing up constantly,” Madison-Rae recalls. Deegan’s condition continued to decline, and he was soon barely able to stand up. He was admitted to the hospital, and “he was curled in a ball because it hurt him to put any pressure [on his back],” Madison-Rae continues. “When we stood him up in the morning, he fell flat on his face.”

Deegan was rushed into a CT scan, which was inconclusive. Madison-Rae wondered if he had developed a hematoma, or blood clotting outside of blood vessels. Physicians suspected he could have spina bifida, which can affect walking but typically appears at birth, or Guillain-Barre syndrome, a rare autoimmune disorder that often occurs after acute illness and attacks the nervous system.

It also became apparent Deegan’s bladder was not draining. In significant pain and distress, he was transferred to a nearby hospital for an investigative MRI. “The neurosurgeon came rushing out and told us that [Deegan] had to go back [to surgery] right away or he would never walk again,” his mom explains. During his spinal tap, Deegan had incurred an extremely rare but serious complication — an injury to his spinal cord, causing blood clotting and nerve tangling that was affecting his normal functions and sensations. In an emergency surgery, he had three vertebrae removed and replaced, his blood clot scraped away, and his nerves untangled. They also drained his bladder, which the MRI showed was so full, it was about to explode.

After recovering his ability to sit and crawl over a difficult two-week period, Deegan moved to Rady Children’s Hospital-San Diego to learn to walk again, which took a month of inpatient rehabilitation. He was discharged and returned home to everyday life, but within a few months, he was back. Deegan had begun losing control of his legs, bladder and bowels. Several doctors closer to his San Bernardino County home were at a loss as to why; several more said it was psychological. After meeting with Andrew Skalsky, M.D., chief of the Rehabilitation Medicine division at Rady Children’s and associate clinical professor of pediatrics at UC San Diego School of Medicine, they finally had an answer. “[Dr. Skalsky] is wonderful. I absolutely love him,” Madison-Rae says.

A Medical Cause

Deegan was diagnosed with arachnoiditis, or inflammation of one of his spinal cord-protecting membranes, caused by scar tissue growing up his spine and compressing his nerves. He was fitted with leg braces, which Madison-Rae says he constantly outgrew — a great problem to have after his degree of damage — and has largely regained his balance and mobility in the years since. But Deegan had another fight ahead of him. Because of the severe effect his injury was having on his bladder and bowel function, Deegan was referred to George Chiang, M.D., a pediatric urologist at Rady Children’s. “Thank God we ended up having Dr. Chiang,” says Madison-Rae, expressing that Dr. Chiang immediately confirmed that Deegan’s issues were beyond his control. “[Dr. Chiang said], ‘this isn’t his fault. This is a sheer lack of being able to feel it.’”

Since that time, Deegan has been through multiple procedures with Dr. Chiang, the most extensive of which were a staged bladder augmentation and a procedure on the bowel. The first created two channels on his belly for Deegan to insert catheters and cleanse his bowels on a schedule and drain his urine, which Madison-Rae says, although challenging at first, has been a huge source of empowerment for him. Deegan has learned to “cath” on his own, and maintains a pattern of draining his bladder every two hours to keep his kidneys healthy, along with his bowels about once a day. Because he can simply step into the restroom and then go about his day, his self-confidence has significantly improved, as has his experience with his peers. “It was so hard at school [when] he was having these accidents. Some kids have been mean to him. They don’t understand how much he’s actually been through. [But now] he feels really good … that he can take care of himself. I want him to understand these things are essential for his survival.”

For Deegan’s second procedure, his bladder was determined to not be large enough for the rest of his body, so Dr. Chiang took part of his bowel tissue to expand his bladder. After this procedure, the mucus that naturally occurs in the bowel had to be flushed manually from Deegan’s bladder, which was painful. However, Dr. Chiang prescribed him a regular dose of an antacid, which has drastically reduced the amount of mucus. In addition, Deegan has had bladder stones and subsequent removals via cystoscopies, which allow physicians to use a slim tube with a camera on the end to examine the inside of the bladder. He also receives regular Botox injections to mitigate his severe bladder spasms, which Madison-Rae says can be debilitating.

Yet even in the face of daunting circumstances, Deegan’s care has allowed him to be “pretty stable with everything,” his mom reports. “It’s so hard to find good doctors and people that really put their hearts into everything. I don’t have enough good things to say about Dr. Chiang and his nurse, Tammy.” Deegan has also found comfort in connecting with other kids experiencing similar conditions, both to have like-minded friends to talk with and lend his support to others. So what does Deegan think about being an inspiration to kids and families navigating a complex health condition? A sweet and simple, “It feels good” sums it up.

Published October 2018