Moved for Collaborative Care at UH Rainbow

Toward the end of her pregnancy, Nikki had an ultrasound that caused concern. As a precaution, she delivered her son Richie by a scheduled c-section.

Nikki and her husband Richard were overjoyed to welcome their new son, but it was soon evident that he had some medical challenges ahead. Immediately after his birth, Richie was treated in the Neonatal Intensive Care Unit and then spent two months in the Pediatric Intensive Care Unit in a hospital outside of northeast Ohio. His initial symptoms included unexplained low muscle tone and respiratory issues.

It took several months, but the persistence of his parents and his medical staff resulted in a diagnosis of a congenital fiber-type disproportion myopathy, the result of a gene mutation. The rare condition affects Richie’s muscle function. To date, Richie’s ongoing medical journey has included a tracheostomy, a ventilator, a feeding tube, and many surgeries.

While Richie was still very young, a job opportunity in the Cleveland area presented itself to the couple. Richard and Nikki spent a lot of time considering their son’s health care options before they committed to moving to Cleveland. According to Nikki, “We consciously chose UH Rainbow Babies & Children’s for its specialized full-care pediatric hospital and its family-centered approach.”

For Richie’s parents, coordination of care is non-negotiable. Previously, Nikki had to make sure her son’s doctors were communicating with each other on treatment details. This was an enormous amount of pressure on a family managing the complex medical condition of their young child. Rainbow offered them more collaborative care – managing the details and ensuring that the physicians coordinate treatment and communicate with each other. Additionally, Richie’s physicians work with his parents, adjusting their recommendations for what works best for Richie and the family.

“Coming to Rainbow was a choice. We needed partners in our son’s care and we needed to know that the solutions the medical staff came up with would work for us. We had to be partners. At Rainbow, they listen when we explain our challenges and concerns,” said Nikki. “Respecting families as partners in their child’s care is the key to creating a better environment for good health.”

Richie continues to face many medical challenges and he and his family currently partner with 13 pediatric specialists. Occasionally he has hospital stays, but the focus of his treatment is on preventing complications related to his complex condition. Richie’s symptoms have stabilized and he gets stronger daily. Richie, now 9, is growing and developing well. He has just entered 4th grade. He is a social kid who likes walks, remote cars (and all fast things), and spending time with friends. He loves traveling to new places and wants to be an astrophysicist when he grows up.

Nikki has become involved at Rainbow by taking a leadership role on the Patient Family Partnership Council. She encourages other parents to be an active partner in their child’s medical care. “Any parent can be involved in their child’s care. Rainbow is a safe place to have your voice heard.”