“Shocked and devastated” is how Katie Rubin describes her reaction after receiving a fatal diagnosis for her second child, Meyer, just hours after he was born in November 2015.
Her pregnancy had been normal, so she had no reason to suspect her son would be born with Trisomy 13, a rare genetic disorder that causes severe physical and developmental problems. Most children born with the disease don’t live past their first birthday.
“This is not an experience you ever imagine would happen to you. It’s your worst nightmare,” Katie says. Thankfully, the hospital staff recommended that she contact Hosparus Health’s Kourageous Kids, a team of doctors, nurses, social workers, CNAs and volunteers specially trained to care for seriously ill children and their families.
“Having a team of support that provided us with both medical care and psychosocial care, it was invaluable,” Katie says. “I can’t imagine going through this experience without Hosparus.”
Hosparus Health coordinated with Meyer’s doctors, and set the family up with a feeding tube, medications and all the medical supplies and equipment they needed to make him comfortable. Katie also relied heavily on the 24-hour care line for advice and reassurance.
While Meyer lived 11 days, and only four days at home under Kourageous Kids’ care, the family was able to make the most of the time they had together.
“I didn’t have to worry about all the little details and the day-to-day care. The Kourageous Kids team was taking care of all of that for me,” Katie says. “I had the opportunity to treat him like my baby for a couple days while he was here. I just got to be his mom and snuggle him.”
While Meyer didn’t require long-term services or extensive medical care, Katie says that “being able to ask questions and have all that support from the nurse practitioner, the nurse, the social worker – people who had guided other families through this experience – was so helpful to us.”
Kourageous Kids’ care didn’t stop after Meyer passed away. The team immediately jumped in to help with funeral arrangements and contacted medical suppliers to remove all equipment and medications. “It was kind of a blur, but I don’t remember having to do anything. It was really nice,” Katie says.
When the family had a memorial service for Meyer, “Everyone from the Hosparus team attended, which was very meaningful to me,” she adds. Her social worker continued to check in with the family for several months, and recommended she take advantage of Hosparus Health’s grief counseling services, free of charge.
Because of the shock of Meyer’s diagnosis and the whirlwind that followed, Katie says she didn’t have a chance to process her emotions until after he was gone.
The support group she joined that was specifically geared toward parents who had lost babies was possibly even more meaningful to her than the medical care Meyer received. Meeting other parents who had similar experiences helped her appreciate the time she had with her son. “I have a lot of gratitude that I got to meet him and be with him.”
Now, Katie is honoring Meyer’s memory by helping to raise awareness about Kourageous Kids.
A nurse practitioner who works with stroke patients, Katie was very familiar with Hosparus Health’s hospice services for adults, but she had never heard of Kourageous Kids. She was surprised to learn about the specialized care the team provides to pediatric patients. “It was really eye opening to see the extent of the services Hosparus Health offers.”
Because she wants to make sure these vital services are available to other families of sick kids who need long-term care, Katie has hosted an online fundraiser the past two years, raising over $6,500!
“It was a matter of luck that we got connected to Kourageous Kids. I don’t want it to be that way for other parents in this situation, so I want to help spread the word,” she says.
Hosparus Health needs your help now more than ever! We hope you’ll join Katie in making sure our Kourageous Kids program is available to other families like hers. To make a gift, click here. Every dollar counts!
*This story was originally published May 19, 2019.