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Complex care team gives mom hope for son with rare disorder

Baby Kariuki has a rare genetic disorder that requires complex care.

By Kortney Scroger

Kariuki Muhinja was born happy and healthy on Nov. 13, 2016, at MultiCare Tacoma General Hospital. His mother, Lydia, took him home the following day, eager to start her new family.

Nothing could prepare her for the life-changing news she received just two months later.

Lydia began noticing some changes in Kariuki’s demeanor. He slowly began losing movement in his upper and lower limbs. His chest grew into a bell shape and he had difficulty breathing. At times, Kariuki lost his ability to cough and swallow — he could only move his fingers and toes.

Lydia took her baby boy to the doctor, desperate for answers.

"I went to the doctor with a lot of dots,” says Lydia. “I needed them to connect.”

At the end of a very long evening in April, Lydia was informed that her son had type one spinal muscular atrophy (SMA), a rare genetic disorder that causes severe progressive muscle weakness. It affects only 1 in 11,000 children.

“When I received the initial diagnosis, I wasn’t given a lot of hope,” she says. “I was told that SMA was a lethal disease and Kariuki would probably not live to see his second birthday. I broke down. I had no idea what to do.”

She began preparing for a tough, hopeless road ahead.

But then she met Jennifer Kett, MD, and the Mary Bridge Pediatric Complex Care Support Team, who works with families of children with life-threatening or life-limiting conditions. Their purpose is to help them navigate their complex medical needs and to provide support.

“Our team is important because some children in the hospital are seeing five or six specialists,” Dr. Kett says. “Families receive overwhelming amounts of information and varying opinions. We can be really helpful in translating information and talking about next steps.”

Lydia says the Complex Care Support Team coordinated all of Kariuki’s care teams and allowed her to focus on taking care of him.

“Just taking care of my son is complex,” she says. “His tree of care is so large. I lost my hope the night of Kariuki’s diagnosis. Dr. Kett brought that hope back.”

Lydia has been a nurse for over a decade. She began her career as an intensive care unit nurse in Kenya, but has been working the last five years at MultiCare Good Samaritan Hospital. Since Kariuki’s diagnosis, she is especially thankful for the flexibility and support she has received from her supervisor and colleagues in finding a schedule that would allow her to work and take care of her son.

Her experience in the medical field helps her address Kariuki’s needs. But as a single mother, the day-to-day can still be challenging.

“Dr. Kett’s role in supporting my family is not to be taken lightly,” Lydia says. “The Complex Care Support Team comes into your life at a very low point. They listen to your challenges and assist you with personal and medical needs. Without their support and the support of my family, my energy would be spent elsewhere. Now I can use that energy to take care of my son.” 

At nearly a year old, Kariuki is still very dependent on technology: he uses a feeding tube, ventilator and suction machine, all of which travels with him to his daily doctor appointments.

“Some families are managing mini intensive care units in their homes,” Dr. Kett says. “It can be emotionally and physically exhausting.”

With the help of the Complex Care Support Team, Kariuki and his mother are thriving. Lydia lovingly describes Kariuki as “too fluffy” — he is now a whopping 21 pounds.

Lydia and Kariuki

“I can’t complain; he is a happy boy,” she says. “We always find time for smiles. He’s a big fan of selfies. Kariuki is achieving milestones now. These milestones are beautiful — we lost them to SMA but we are getting them back now.”

Kariuki is now able to bring his hands together, hold and jingle a toy, bring things to his mouth, reach out to his mom and even move his legs a bit. They are also working on sitting and holding his head up.

“We find joy in the small things,” Dr. Kett says. “Our patients are constantly defying our expectations. Our goal is to help families plan for what they are going to hope for next.”

“I want the same as other parents,” Lydia says. “I want him to be a kind, honest, hardworking, contributing member of society.”

Although there is still no cure for SMA, Lydia is very optimistic largely thanks to all the help she has received along the way. Lydia also credits Spinraza, a new medication that is helping Kariuki regain muscle strength.

“God gave me this baby because I could take care of him,” she says. “Unbeknownst to me, I have found the strength to care for my son’s complex condition. I thank Dr. Kett for making complex needs not so complex. Every day, there are things I can now do joyfully and peacefully.”

You can support the Pediatric Complex Care Team by joining us on Dec. 1 at Tinsel on the Town, a Mary Bridge Children’s Festival of Trees event benefiting Pediatric Complex Care.

Learn more and buy tickets