Blyth Taylor Lord and her best friend from college married identical twins. Their close connection would later sustain them both through the news that Lord’s 6-month-old daughter and her sister-in-law’s 18-month-old son were both diagnosed with Tay-Sachs disease. The two couples were unknowingly both carriers of the rare, genetic disorder.
The support they were able to give one another ultimately inspired Lord to found the Courageous Parents Network, an online resource for families caring for children who have serious illnesses. Its mission is to “empower, support, and equip families” and the group aims to grow confidence in parents so they become the best caregivers they can be.
Offering hundreds of videos for families
The heart of the Courageous Parents Network is an extensive library containing over 600 videos of families and providers speaking about their experiences with rare disease and other childhood illnesses. Among dozens of topics, you’ll find videos of a parents talking about spinal fusions, feeding tubes and clinical trials.
Before Jennifer Siedman joined the Courageous Parents Network as director of community engagement, she was a mother to a child with rare disease herself, and was interviewed for a video about her experience with feeding tubes as a form of palliative care for her son, Ben.
Siedman says the goal of CPN isn’t to be instructional – medical providers can handle that – but to help parents with the psychosocial and emotional aspects of parenting kids with rare disease. The group presents information to help families make the best decisions for their child. For example, you won’t find a resource on how to get a feeding tube or how to use one, but rather how to decide if it’s the right choice for your family.
“There’s a medical concept called shared decision making where the patient and provider feel equally listened to,” Siedman says.
Navigating a diagnosis
In addition to CPN’s video resources, the website hosts blogs, podcasts, and written guides on topics like marriage, siblings, attending your well children, meeting with your medical team, and more. They also offer small learning sessions called Pathways, which Siedman likens to taking an online course. The videos can help parents through tough times, like adjusting to a diagnosis.
“It's certainly hard to find another parent, short of another rare disease parent, who understands the feeling,” Siedman says.
During the past two years, CPN has also started hosting monthly Zoom meetings called “In the Room.” Recent topics have included: What does a good day look like when your child has a serious medical illness? What is parenting children with rare disease like for fathers?
A recent session, Siedman says, was on the medical home. “When you have to go home with all this medical equipment, no one tells you where you’re going to store it,” she explains. “Are you going to have enough outlets in your house to plug it all in? There are a lot of considerations that get ignored.”
Usually these meetings are structured as an intimate group so people can feel comfortable to chat and ask questions, though Siedman says their recent sibling meeting had about 300 people in attendance. Doctors, nurses, patient advocates and others also access the organization’s resources. One doctor told Siedman he watches the organization’s videos to help remind him that the words he uses make an impact on kids and families.
“That was one of the best compliments,” Siedman says, because it shows the organization is amplifying the voices of families in a meaningful way.
Getting a conversation started
A lot of the resources available from CPN serve as discussion starters within families, especially those that may not know where to start to unpack their feelings. Siedman says watching a video together can be a great way to break the tension when neither person wants to start. The people in the video share first, which can make it easier to open up.
CPN recently launched a phone app to make their resources more easily accessible from anywhere. The move reflected an understanding of how busy day-to-day life can be for parents who manage a child’s serious health condition.
“We recognize that people, especially parents of medically complex children, are often doing everything on the fly,” Siedman says. “So we needed to be able to bring this resource to them on the fly.”