Making it to Adulthood With Chronic Illness
Many children used to die before reaching adulthood. Today, modern medicine has increased the lifespan for many people living with illnesses such as congenital heart conditions, cystic fibrosis and sickle cell anemia. A bright future can now be had in what was previously a poor prognosis.
Dr. Joseph Adinaro, a cardiologist with Riverside Cardiology Specialists in Williamsburg, Va., mainly sees older patients with heart issues they’ve developed over their lifetime. But he says that he is now inheriting patients who were born with heart defects due to improvements in screening and surgical advances. He sees young adults who have heart issues but are managing well.
“A large part of this is prenatal ultrasounds that screen for heart defects even before birth,” Adinaro says.
Prenatal care is a key factor to identify and diagnose, as well as numerous post-birth screenings. Sharon Patrick’s twins, Jalen and Kaylen, were born prematurely and struggled with numerous medical conditions and surgeries.
“The technology that they have today, the different medicines, monitoring systems, it made a difference. I feel as if I was in the hands of people who’d done this before and knew exactly what to do,” Patrick says.
Programs that help these young adults make the transition to adulthood are becoming more common. Mitzi Glass is the sickle cell transition coordinator for Norfolk-based Children’s Hospital of The King’s Daughters Transition Intervention program. Today, sickle cell anemia is diagnosed at birth through consistent newborn screenings, a huge change from the past, when children with it died early from bacterial infections that overwhelmed their systems.
“That’s why a transition program is so important. My job is to help young people and their parents get the skills to move past pediatrics into adult care,” Glass says.
The transition team begins working with children at age 15, aiming to make sure each teenager understands the disease, and what they need to do to take care of themselves by age 21.
“We want them to be ready to answer questions about their disease with their health care providers, and know enough to be fluent. Things like knowing medications and dosages,” she says.
Young adults don’t want to feel different from their peers, but have to balance that with needs determined by their disease, for example, knowing when to be seen by a doctor for an illness.
Patrick’s children are now teenagers and have overcome many medical challenges.
“They are very aware of what they’ve gone through and that we are blessed. They participate in lots of March of Dimes activities. We talk about the importance of ‘taking care of yourself’ all the time, and I stress that yearly exams are very important,” Patrick says.
Today, more than 45 percent of all people with cystic fibrosis in this country are 18 years or older. The Cystic Fibrosis Foundation created a guide for adults living with cystic fibrosis, including lung care, diabetes screening and how to travel with CF. It includes practical tips including coping and avoiding anxiety and depression. Another huge issue for making the leap from childhood to adulthood is insurance coverage, and transition programs try to address that as well.
Besides ensuring that they are doing well in school, and planning for their lives after school, young adults with chronic illness can to learn to advocate for themselves and develop a support system when they are ill or need someone to listen.
“You teach the same skills you teach any young adults, but they have a chronic illness and you need to factor that in. You have potential, you have a future, and it’s our job to figure out what that’s going to look like,” Glass says.
Congenital Heart Defects
Congenital heart defects are he most common type of birth defect. Studies estimate that a decade ago, between 650,000 to 1.3 million adults in the United States were living with a congenital heart defect. Currently, 40,000 infants per year are born with a heart defect.
Sickle Cell Anemia
Sickle cell anemia affects 90,000 to 100,000 Americans. Sickle cell-related death among children younger than 3 years of age fell by 68 percent within the last decade, possibly due to a vaccine that protects against invasive pneumococcal disease.
Nearly half a million premature babies are born each year, defined as before 37 weeks of gestation. Survival statistics are correlated with the level of prematurity, as well as birth weight, lung development and other concurrent medical conditions. According to the March of Dimes, a baby born at 23 weeks has a 17 percent chance of survival, a baby born at 27 weeks a 90 percent chance and after 34 weeks, a rate similar to a full-term baby.