The moment Susan Timmins learned that her granddaughter had a serious heart defect is etched in her memory. “It was life changing,” she said. “Cataclysmic.”
It was also only the beginning. Her daughter would need three heart surgeries before the age of 3. It was a pioneering treatment in the mid-1980s, and it took the family into uncharted medical territory.
But it worked. And after a childhood filled with visits to the pediatric cardiologist, they found themselves in a new kind of uncharted territory when her daughter prepared to leave for college. Timmins had spent 18 years overseeing her daughter’s care. How does a parent pass on such responsibility?
“It was clunky and bumpy at times,” said Timmins, a Tampa Bay, Florida-area restaurateur who contributed to a new report on managing the transition of care in people with congenital heart defects. “If we had professional advice, it would have been amazing.”
The report, released Thursday as a science statement by the American Heart Association in its Journal of the American Heart Associationaims to help families in similar situations and updates best practices first set out ten years ago.
It is also a call for health care systems to invest in helping the growing number of adults with congenital heart problems, said Dr Anitha John, who led the expert group that wrote the statement.
“The support we’re instituting in their care during this time can really help sustain lifelong health care,” said John, medical director of the Washington Adult Congenital Heart Program at Children’s National Hospital in Washington, DC.
Families play a vital role in the transition process.
“As part of the process, parents or caregivers need to change their role from the primary caregiver to the person who plays more of the support role. Someone who is always there to help, but not the person who necessarily makes the decisions” said John, who is also an associate professor of pediatrics at George Washington University.
The need for guidance increased as the number of survivors increased. Timmins, who sits on the board of the Adult Congenital Heart Association, said when her daughter was first treated, few people thought about the distant future.
“The surgeons themselves did not expect these babies to live to adulthood,” she said. So when these children became adults, the medicine was not ready for them. The statement notes that in developed countries, adult survivors of congenital heart problems now outnumber children with the same conditions.
The statement outlines several potential models for bridging programs and recommends milestones in knowledge that young patients should achieve as they age, from basic understanding of their condition to understanding how medical insurance works.
The statement highlights the need for flexible and individualized approaches, especially for patients who also have neurocognitive delays.
It also notes systemic issues affecting the transition that need to be addressed. Overall, less than a third of the nearly 1.4 million adults living with congenital heart problems receive specialist care. Part of the problem is access. The statement cites an estimate that half of the US population lives more than an hour away from a reputable center for adult congenital heart defects. Uninsured, Hispanic, or low-income survivors are most likely to be affected.
Even among people with access, getting young adults who don’t feel sick to focus on their health can be a challenge, John said, which is why it’s important for healthcare professionals to talk to patients early. “They’re going to have this for the rest of their lives, and they need to talk to a doctor about who they should follow through their life.”
The whole process, John said, is a family affair. It’s still for Timmins and his daughter.
Today, Timmins’ role is less that of director of care and more of a sounding board.
“She calls me her memory keeper. She has all her medical records, but she points out that she had all the surgeries before she was 3. She doesn’t remember.”
With no expert advice when her daughter moved for college, Timmins said the two had to go on instinct. She had to learn to phone her own prescriptions and make her own appointments.
There were also emotional challenges. Timmins has always been a strong supporter of her daughter. When it came time to pass the baton, she was faced with the question of what to do with all this ferocity. “How do you let it go? »
Following her child’s lead worked — giving guidance and support when needed, and letting go when she was ready to take charge, Timmins said. “But following your child’s lead with professional support is ideal.”
For young people with heart defects, shifting to adult-centered care is key to health, quality of life
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