my son will be transitioned to adult care without having a doctor who understands his disease
transitioning young adults with a life-limiting and rare progressive disorder to adult care that cannot meet their needs is a reckless act, writes marcy white, whose son jacob lives with a rare degenerative central nervous system disorder.
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marcy white's son jacob lives with pelizaeus-merzbacher disease, a rare degenerative central nervous system disorder. supplied
there is one word i can’t stand. it’s a word that, as the mother of a child who requires complex care, makes me cringe and my stomach clench: transition. transition, as in the termination of all working relationships with the pediatric medical specialists that have cared for my son, jacob, since his diagnosis. when he was 10 months old, we learned that jacob had pelizaeus-merzbacher disease (pmd) — a rare, progressive, and degenerative central nervous system disorder — and was unlikely to live into his teen years. when he was in the midst of a 236-day hospital stay, his doctors had my husband and i tell jake’s younger sisters that their brother was unlikely to live until his next birthday. he was 13 at the time.
transitioning to adult care would feel like “falling off a cliff”
i first heard the “t” word six years ago, during a checkup at toronto’s sickkids hospital. the doctor explained that when jacob turned 18 years old, he would no longer have access to the health-care team he had known. instead, he would be “transitioned” to the adult health-care system, which would feel, as the doctor put it, “like we were falling off a cliff.”
we did not anticipate that jacob would reach his 18th birthday, but as the years passed, with a lot of diligent, non-stop care, and a great deal of strength from the bravest boy i know, it became a real probability. i began investigating what his medical care would look like after his milestone birthday, when despite his size and inability to move independently, he would legally be an adult.
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it didn’t take long to discover that the adult medical system was not designed to manage patients with complex medical needs like jacob. this system was built decades ago, when people who were medically-fragile, like jacob, rarely survived long enough to reach high school. but because of medical and technological advances, kids with neurodegenerative diseases and many other types of life-limited illnesses can now live to young adulthood and sometimes beyond.
from left to right: marcy, sierra, andrew, jamie, and jacob. supplied
unfortunately, these advances are not reflected in today’s patient care model. the medical specialists needed to safely care for my son don’t exist because they never had to before. despite living in the largest city in canada with access to many of the best medical specialists in the country, i have been unable to find a doctor with the knowledge and experience necessary to take over jacob’s care. and when i consider the transition plan that is in place for him — part of which includes specialists from five different hospitals who have never met jacob — it’s just not good enough.
and so, the battle has begun to keep him in the safe hands of his specialists that have cared for him for nearly two decades.
for many young adults with disabilities, transitioning to adult care is filled with challenges. for those with a life-limiting and rare progressive disorder, it is a reckless act. until the adult health-care system develops a similar holistic model where complex patients can have their needs managed and co-ordinated by staff who have experience with this patient population, including engaging in resident and fellowship learning opportunities, the “t” word should not even be considered a viable option — especially for those whose needs cannot be met.
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the decision to transition a child must be based on what is in the medical best interest of the patient. the process in its current form is not even close.
editor’s note: healthing is currently investigating the protocols for transitioning children who require complex care. in the coming weeks, we’ll be posting a story that takes an in-depth looks at the challenges facing marcy, jacob and other families who care for kids with complex medical needs, as well as the changes that need to be made to support them better.
marcy white is the mother of jacob, who lives with pelizaeus-merzbacher disease (pmd) — a rare, progressive, and degenerative central nervous system disorder.
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