Living Well with Serious Illness: Ryan’s Pediatric Palliative Care Story

 

When Dan and Meghan’s five-year-old son Ryan was born with a rare genetic disorder that causes severe developmental delays and many other complications—they didn’t know where to turn. Seizures, surgeries, and sleepless nights due to respiratory issues that required frequent hospital stays in the first six months of Ryan’s life took a toll on the young parents. 

“I spent so much time on the phone dealing with insurance companies and coordinating doctor’s appointments that I wasn’t able to spend quality time with my newborn,” says Meghan. 

As the number of symptoms and medical issues increased, along with traveling long distance to get to the closest hospital, Meghan and Dan began searching for extra support. Social media research led them to a specialty that helps children and their families deal with all aspects of a serious illness.

This is Ryan’s palliative care story. 

Ryan’s parents requested a referral through their primary care doctor to a pediatric palliative care team at Akron Children’s Hospital in Ohio. 

“We didn’t know anything about it, but through research and conversations with other families like us, it became clear that this could benefit us greatly,” says Dan.

Pediatric palliative care can help any child suffering from a serious illness. The palliative care team, which is made up of doctors, nurses and other specialists, supports the child and family every step of the way. Palliative care specialists focus on the whole child and how the child’s illness and treatment affect the entire family. They work to control symptoms and help clarify goals of care, as well as coordinate with other doctors caring for the patient.

The major goals for Ryan’s parents, who both work full time, were to avoid multiple doctor appointments throughout a week and to reduce the number of hospital stays. The palliative care team stepped in as a liaison between the family and Ryan’s different specialists to make sure all appointments could be scheduled on the same days. The team also arranged for medical equipment to be installed in their home and trained them on how to use each one, which cut the number of hospital visits dramatically. 

“The training and care coordination made an enormous difference. Being able to care for Ryan at home has given us more time and energy to enjoy quality time with him,” says Meghan.

Someone from the palliative care team also comes to their home every six weeks to manage Ryan’s various symptoms and help Meghan and Dan handle the emotional stress that comes with caring for a special-needs child, as well as to install any new equipment and provide training.

“If they aren’t here, they are a phone call away. We now have a team who has our back through every up and down,” says Dan.

Five years after the first palliative care meeting, Ryan still deals with seizures and breathing complications, but he spends less time in the hospital and is more active with his family. 

“I can say with full confidence that palliative care has made all of the difference in Ryan’s life and in our lives,” says Meghan.

For more information on how palliative care can help you or your family, visit getpalliativecare.org. 

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