This article originally appeared on Point32Health’s digital content hub in partnership with the Boston Globe in October 2022.
When Victoria and Caio Borges learned their son Lucas had cystic fibrosis (CF) at three weeks old, they had no idea what it even was. The progressive and currently incurable disease thickens the body’s mucus so that Lucas, now 4, has to work harder to clear it out of his lungs and digestive tract.
“The lungs are like a dark, wet basement, which is a breeding ground for bacteria,” says Victoria. “Lucas has to wear a vest every day for 30 to 40 minutes, twice a day, that shakes really hard on his chest,” to help clear phlegm from his lungs. Without doing so, a minor cough or cold could last for weeks and maybe send Lucas to the hospital. He wears the vest for several hours each day if he is sick.
Victoria, who learned after Lucas’s diagnosis that she and Caio were CF carriers, found a team of health care providers at the CF clinic at the Children’s Healthcare of Atlanta. Lucas visits them — a pulmonologist, a nutritionist, an endocrinologist, and a mental health specialist — every three months.
“The first thing they said to me was, ‘Don’t Google CF, because online material is completely dated and medicine has advanced so quickly,’” she says. “But of course, that was the first thing I did… And I just had this wave of emotion. I was not just a new mom, but the mom of a disease I’d never heard of.”
Ultimately, Victoria found parents of children with CF who were a few years ahead of her son, both through the CF clinic at Children’s Healthcare as well as others online sharing content about their CF children. Victoria would read and comment on their social media posts, eventually building a virtual community. From there, she was able to connect with a community of CF parents to share tips about how to live well with CF.
“Things like sterilization [are] really important,” says Victoria. “Not just nebulizer cups, but things like straws and sippy cup lids, and pacifiers, and things that don’t get sterile in a dishwasher. Before, you had to boil them. Now, there are bottle sterilizers and you can carry them around … and just push a button, or you can use microwave bags to sterilize items.”
For parents of children with debilitating medical needs, caregiving is a lifelong commitment. Finding connection with others, either in person or online, can be a lifeline both to learn from each other and to help locate respite care when possible so caregivers can limit or prevent burnout. While Victoria found her community online, she is also active with the Georgia chapter of the Cystic Fibrosis Foundation, where she fundraises and meets other parents of CF kids. Due to the bacteria CF kids harbor in their lungs, it is not recommended for CF kids to have playdates or get closer than six feet to each other, because of the risk of severe illness. So, “finding community in person can be difficult,” Victoria says.
Building a support system
Part of building your community includes finding the right care advocates to guide you through your child’s needs. Darlene Waters D’India, RN, CCM, does just that. As a care manager with Point32Health, a nonprofit health and well-being company and parent company to Harvard Pilgrim Health Care and Tufts Health Plan, D’India works alongside her patients’ ongoing care teams to help support every child and their family.
“It’s a team approach, collaborating to address the needs of the member and the family,” she says. “Registered nurse care managers will go with a community health worker to a home visit and assess what is the most pressing need and will then help navigate the family to the appropriate resources.” Care managers can even assist with lining up appointments and care coordination, securing durable medical equipment and helping determine how health insurance coverage and supplemental coverage will work.
Determining when a caregiver needs a break is a crucial component of the relationship. “We will help with referrals to behavioral health specialists for a caregiver and member, if appropriate,” D’India says. “We educate families about support groups in their community and how to apply for respite. We have a caregiver assessment to screen caregivers for burnout as well, and if needed, we then connect them to the appropriate help. This is an ongoing service to our members, and they can opt in to care management, or opt out. We are always available to help when it is needed.”
Earlier support for those with chronic conditions
Every child with a chronic condition has a different diagnosis story, and all families can benefit from receiving specific help as soon as they know exactly what they can expect. For example, for children diagnosed early in life with autism, Point32Health is partnering with Cortica, a physician-led autism services provider, to expand access to advanced neurological therapies for autism spectrum disorder (ASD) and other developmental differences.
Registered nurse care managers at Point32Health will collaborate and be part of the care team for eligible members using Cortica. “They offer personalized Applied Behavior Analysis (ABA), medical, and developmental therapies all in one place,” says D’India. “This is a convenient way to get your child diagnosed quickly and to start the treatment as early as possible, which is very important when children are first diagnosed. Earlier treatments for autism lead to better outcomes for children.”
And better outcomes can help as science and medicine advance. Victoria is grateful for the approval of a new drug called Trikafta, which has been used for kids age 6 and older to help correct the mutation in the body that causes CF. “Because of it, life expectancy for those with CF went from the teens to the mid-fifties,” explains Victoria, though there is a large part of the CF population who don’t qualify for it.
Whether support communities are based online or in person, such as the caregiving resources and advice that members of Tufts Health Plan and Harvard Pilgrim Health Care can access for their kids living with chronic conditions, the fact that they exist can provide a lifeline for those who need them.
