“We know from previous data that there’s a higher prevalence of these conditions in adolescents and adults with CHD, but before this, there hadn’t been any data in children,” says principal investigator Keila Lopez, MD, a pediatric cardiologist at Texas Children’s Hospital. “That struck me as odd because the earlier we can intervene, the better the outcome.” Congenital heart disease is a catch-all term for one or more structural problems with the heart that are present since birth. Affecting about 1 percent of babies born in the United States each year, CHD is the result of the heart or blood vessels near the heart not developing properly in utero. The defects can range from mild, such as a small hole in the heart, to severe, such as poorly formed or missing parts of the organ. For the current study, published January 3 in Pediatrics, researchers reviewed medical records from Texas Children’s Hospital for children and teens ages 4 to 17 from 2011 to 2016. The study included 118,785 children, 1,164 of which had congenital heart disease. Overall, 18.2 percent of patients with CHD had a diagnosis or medication for depression or anxiety, compared with 5.2 percent of those without CHD. There was also a higher prevalence of ADHD among those with the condition, at 5.1 percent compared with their peers at 2.1 percent. The results also showed that children ages 4 to 9 with simple congenital heart disease (meaning they did not require immediate or possibly any surgical intervention) were 5 times more likely to have depression or anxiety than those without the disorder. Patients the same age with a more severe form of CHD were 7 times more likely to have depression or anxiety. Another important finding of the study, Dr. Lopez says, was that non-Hispanic Black, Hispanic, and Asian American children were significantly less likely to be diagnosed or treated for anxiety and depression than white children, despite the fact that the prevalence of these conditions are thought to be the same across all races and ethnicities in the general population. RELATED: #BlackHealthFacts MATTER She notes a variety of reasons for this disparity. “Other studies have shown that minority children are more often labeled as problematic or disruptive as opposed to being recognized as having a condition like ADHD, anxiety, or depression,” Lopez says. “Sometimes there are cultural differences or stigma surrounding anxiety or depression for certain populations so that might end up resulting in a lower likelihood of seeking care.” Other barriers include having access to quality mental health services and lack of insurance coverage, she said.
What’s Behind the Connection Between CHD and Mental Health Disorders?
The reason for the increased odds of mental health disorders in children with congenital heart disease is multifactorial, the researchers say. First, underlying genetic syndromes, prematurity, certain cardiac procedures that treat CHD, and prolonged hospital stays can all increase the risk of neurodevelopmental disabilities and can contribute to depression, anxiety, and ADHD. And of course there’s the tremendous amount of emotional stress that comes with CHD for both the child and family, though no two experiences are the same. “Congenital heart disease is such a broad swath with over 60 different kinds of CHD, ranging from simple to very complex,” Lopez says. “Some kids never need surgery and some require three or four surgeries. Some require months-long hospital stays. Some just require minimally invasive procedures. Depending on how often they are interacting with the system and what their experience is like has a lot to do with their anxiety and depression levels." Debbie Dore, senior pediatric social worker in the Congenital Cardiovascular Care Unit at NYU Langone’s Hassenfeld Children’s Hospital, notes that as pediatric CHD patients get older, they may face body image issues and bullying from their peers. “Some of these children don’t grow like other kids do and they can have a really hard time with that,” she says. Parenting stress levels can also play a role in how children cope with CHD. “Children look to their parents for reassurance,” Dore says. “If you have a parent that’s kind of falling a part, the child looks to that parent and also falls a part.”
Signs a Child Is Struggling With a Mental Health Disorder
A major takeaway from the Pediatrics study is that pediatricians should consider screening for all congenital heart disease patients, as well as children with other chronic illnesses, the researchers say. However, parents can also play an important role in identifying mental health problems in their children. “There are some obvious signs a parent can look out for, like persistent sadness or a child that’s withdrawing from or avoiding social interaction,” Lopez says. “Obviously, anyone who’s talking about hurting themselves or suicidal ideation, newfound outbursts, or extreme irritability are also signs.” More subtle signs include unexplained changes in mood and behavior. “Some children may want to sleep more often or not want to eat,” Dore says. “Other signs may include acting out in school or with family members or if there’s a change in the way they’re interacting with their peers or shutting down and not wanting to do the things that used to enjoy doing.” Parents should also watch out for psychosomatic symptoms like aches and pains where their kids didn’t have them before and if they’re children are not responding to disciplinary actions, which can be signs of mental health or behavioral disorders, Lopez says.
How Parents Can Help Children Cope With CHD
How parents respond to their child’s health greatly affects how children handle their own diagnosis. For that reason, Lopez recommends parents care for their own mental health. “It’s okay for parents to take breaks,” she says. “It sounds like a really simple thing, but especially in the hospital setting parents may feel obliged to stay 24/7 so giving them permission to take a break is important.” She says parents should also know that they are not the reason their child has congenital heart disease. “I think it’s really important for parents to understand that for the vast majority of congenital heart diseases, we do not know why they occur. So giving parents reassurance that this is not your fault and it’s a random thing that occurs is really important,” Lopez says. When it comes to talking to children about CHD, Dore recommends being honest with them and learning the best way to give them knowledge. “The attachment and trust between parent and child is so important,” she says. “You wouldn’t say ‘We’re going to the hospital and everything is going to be fine.’ You’d say ‘We’re going to the hospital. Your heart needs surgery and it’s going to hurt but we will be there and make sure you get the right medicine and the best care.’ As a parent, you have to prepare your child and give them the tools they need to get through.” Teaching children when they need to ask for help is also important, she says. Finally, having a strong support system of family and friends and seeking out support groups may also be beneficial for the whole family.
