Caring for the Caregiver

Heartbeat Magazine Caring for the Caregiver


By Mary Dunklin

Stress. Fear. Loneliness. Uncertainty. Talk to any parent who is raising a child with congenital heart disease and these words likely will come up often. When a child is in need, the whole world stops for parents. Mundane parental tasks are quickly replaced with important decisions regarding care and treatments. Routines, sleep and self-care are disrupted and, as a result, caretakers of children with CHD are at risk for increased anxiety, depression and post-traumatic stress disorder, studies show.

“I think back on that time as the loneliest and most terrifying of my life,” says Sarah Woolf-King, whose infant son, Charlie, was diagnosed with a congenital heart defect and had open heart surgery at just 9 weeks old. “I didn’t know how to ask for help, and I wasn’t even sure what I needed.” She witnessed firsthand the lack of attention on her mental health during this time and says the system is designed to only focus on the child. “That ignores how fundamental the parent-child bond is, and how affected a child’s health is by the parent’s mental health,” she says.

Charlie, now 6, recovered relatively quickly, but Woolf-King’s own emotional healing took much longer. She started to face certain triggers: the smell of soap, driving past the hospital or seeing the place where the family lived during her pregnancy.

Combined with other stressors, those reminders contributed to feelings of irritability, numbness and obsessive thoughts “about things that didn’t matter.”

“I wish I would have accessed mental health treatment much earlier in the process,” says Woolf-King. As an assistant professor in the psychology department at Syracuse University, she knew she was “too uniquely positioned” to ignore the issue. So she decided to research the topic to shine a light on the need for mental health awareness for parents with a child with CHD. And, just as importantly, she wanted to explore the issue as a way to heal herself.

One of her studies, which was published in 2017, estimated that up to 30% of parents of children with critical congenital heart defects had symptoms consistent with a diagnosis of PTSD, and more than 80% showed significant symptoms of trauma. Elevated symptoms of depression, anxiety and severe psychological distress were also common. “Parents need extra support and mental health treatment that is feasible and accessible,” Woolf- King said in the study, which also proposes integration of mental health screening and treatment into pediatric cardiology care. “Healthcare providers on the front line of treatment for these parents could play a significant role in connecting them to care,” her study noted.

For a second study in 2018, she interviewed parents and providers who “described the CHD treatment process as having a pronounced and long-term impact on [their] mental health.” This may not surprise parents who have lived through the trauma of a child’s diagnosis. But it does validate their experiences and prove the need for more research and funding to improve the services offered to parents and families.

‘They’re Not Alone’

Valerie Munoz is one mom who now advocates for improving the lives of these parents. Her third child, Bridger, was just 36 hours old when they learned that something was wrong with his heart.

Bridger had a “rough first two months of life,” Munoz says. One issue that complicated the situation was the family had recently moved from Utah to Indiana, which meant help from relatives was limited. “I didn’t have anybody,” she says of those early days. Eventually, her mother-in-law came to help and other out-of-state family members banded together to care for her two older kids.

When her husband went back to work and her mother-in law returned home, Munoz realized she was going to be alone at the hospital. “I remember thinking, ‘I am never going to be able to get through this,’” she says, adding that being discharged and going home was another tense time as the family tried to figure out their “new normal.”

The stressful times were taking a toll on her and she noticed more anxiety; she increasingly did not want to leave the house. She credits her father with advising, “You have to take care of you.” Since then, she and her husband have learned to recognize when they’re reaching their peak stress levels. Each will take mental health breaks, whether it’s for exercise, hobbies or just time alone going to the store. “I’m a firm believer if you’re not going to take care of yourself, then you can’t properly take care of your children,” Munoz says.

She also noticed that the new baby’s medical issues weren’t just affecting the adults, but her other children were showing signs of stress as well. That’s why the family makes it a priority to have one-on-one time with each child. They also plan family vacations to coincide with follow-up doctor visits as a way to bond and reconnect as a family. “Our kids are living the same life with us” so it made sense that the stress was a family issue and not just a mom and- dad issue, she says.

Through her Mended Little Hearts group in Indianapolis, she has learned the value of connecting with other parents in similar situations. “It has literally been a lifesaver for me,” says Munoz, adding that these relationships opened up a whole new world for her. Now, she’s the one who mentors and advises other parents. “The thing I tell everyone is to just breathe, to just remember they’re not alone,” she says. “There are others who walked this path before you.”

A Network of Support

Whitney Reed remembers those early days of learning about CHD. She was 22 weeks pregnant and at her doctor’s office for a routine scan that she assumed would be typical. Unfortunately, the results weren’t good. She wouldn’t know the true extent of the diagnosis until the baby was born. Reed knew her baby (who she prefers not to name) would need life-saving open-heart surgery at birth. But, at that time, she remembers thinking, “we don’t even know what it is, we just know it’s serious.”

That seriousness followed her through the rest her pregnancy, with much of the time spent stressed, scaredand anxious. “I’m glad I found out so I could prepare, but it made for an unhappy pregnancy,” she says. Her infant daughter needed three open-heart surgeries, which took a toll on Reed’s emotional health, leaving her anxious and crying all day.

The experience is easier for her to talk about now, but at the time she felt like she had a mental breakdown. “The last person on your mind is yourself,” she says, adding that she now advocates for parents to try to have someone who is looking out for them, who can suggest they take a break or offer relief even for a little while. Finding a creative outlet is another way she processed her emotions and expressed her feelings. “Writing about it was my therapy,” says Reed, who has posted multiple articles on the topic. She also reached out to her doctor asking for antianxiety medicine, an option she hopes other parents would be open to even for a temporary time.

Finding a network of support and reaching out to other heart patients through Mended Little Hearts and other online services was another coping technique she turned to in her time of need. “It was helpful just to talk to them because they know the pain you’re going through,” she says.

Reed also found that her faith was an important part of her healing process. For her, it was a belief in God, but she says even parents who didn’t think they were spiritual before the diagnosis may find they benefit from adding prayer, meditation or other faith-based practices. Through her faith, she says, it was a relief to realize “this is out of my hands, out of my control.”

Hope for the Future

Woolf-King says the focus on the emotional and mental health of parents is improving. And, she says, more hospitals are integrating care to treat not just the affected child, but the entire family. She recalls a recent conference that included a session on family stress and coping, which shows there is a “group of people who care passionately about this topic.”

They’re also actively trying to change the future outlook by implementing new guidelines that include more family care centers, universal screening for parents, integrating self-care into the hospital setting, more support groups and continued care after discharge. This long-term focus is something that also benefits individual families at home, Woolf-King says.

For example, even after the trauma of surgeries and hospital stays are over, parents have to learn how to balance the initial response of being overprotective with the ability to let the child have as normal a life as possible. “This is part of the fabric of who you become as a parent,” she says. “It never totally goes away.”

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