Coping as the Parent of a Child with Pulmonary Hypertension
“This hurts as a parent. I am supposed to make the hurt go away. I am supposed to make it all better but I can’t.”
“I want to yell and scream that my child is not even two years old. How dare she be diagnosed with PH. I feel confused, depressed, hurting, almost … grieving? I don’t know why I’d be grieving. She’s not dead.”
“Some days I’m fine, others I feel like my child has been handed a death sentence. I know that she hasn’t, not really — that there are treatments, and life expectancy has been extended — but it still just bashes me over the head occasionally. I wonder what kind of life to expect for her.”
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A child’s diagnosis with PH is a life-changing event for both the child and the child’s parents. On the heels of the uncertainty, tests and appointments leading up to the diagnosis, some of these changes are positive steps forward. A PH diagnosis can bring answers, explaining symptoms that a child has been experiencing, and treatment, giving a child’s medical team the information necessary to introduce medication to relieve symptoms and slow disease progression. Yet PH is a serious illness that can also introduce many difficult changes and challenges. If your child has been diagnosed with PH, it’s important to remember that there are no right or wrong reactions. Give yourself the space to feel and respond to this news without judgment so you and your entire family can begin to move forward.
Families of children with PH may encounter a range of daily life challenges. Parents need to cope with the expansion of their parenting roles to include significant health-related responsibilities, including learning new medical terms, coordinating and taking their child to doctors’ visits, managing complex medications that require constant monitoring, helping their child through medical procedures, and explaining PH to family, friends, colleagues and teachers. The entire family may face disruptions to daily schedules to accommodate medical appointments and hospitalizations. The child with PH may be suffering physically and emotionally, taking a toll on parents and healthy siblings, who might feel helpless or guilty. One parent shared, “I wish I could make it all better.”
PH may also introduce far-reaching challenges that can alter the fundamental structures of a family’s life. In some families, a parent needs to become a stay-at-home caregiver. Some families are forced to move to be at a lower altitude or to be near the child’s PH clinic. For others, health care costs and job changes can lead to major financial difficulties. The family may need to make lifestyle changes to accommodate financial need or the child’s physical ability. This may mean forfeiting cherished, “normal” activities, like vacations. Stress and shifting roles may also affect the nature of relationships and social interactions within and outside the family. Co-parents may find that worry and stress change their romantic relationship. Children may experience stress in response to disrupted schedules and activities, changes to school and teachers, or frustration with friends or teachers who don’t “get it.”
Studies have documented the tremendous stress that affects the child, parents, and entire family when a child is diagnosed with PH. Life changes ranging from small inconveniences to major shifts in a family’s organization to profound worries about the future can be scary and overwhelming, especially for parents who feel pressure to remain in control at all times. All the stress can build up and, if left unaddressed, may lead to caregiver burnout, chronic anxiety, or other mental health challenges. While it requires time and commitment, prioritizing your own emotional health as you face PH can make you more capable of moving forward and beginning to help the rest of your family cope.Indeed, coping with stress, uncertainty and anxiety can take a toll on the entire family. While as a parent it may feel unnatural to prioritize your own needs, it’s important to stay attentive to all the personal and emotional challenges you’re up against. Parents may be anxious about the future in the short-term, worrying about upcoming tests and procedures, and the long-term, fearing for what the future holds for their child with PH. Some parents experience a looming fear of illness and death even when their child is doing well. The losses associated with PH, from the loss of family activities to the loss of professional or community roles, can send parents into a prolonged grieving process. While this is normal, many parents struggle with acknowledging and coping with their grief. One parent spoke to the difficulty of putting on a brave face day-in and day-out. She said, “I have days where I am dealing with everything one minute, and then suddenly, with no trigger, I want to lash out at the world for my child having pulmonary hypertension.”
PH is a serious illness that many parents find overwhelming, especially in the year following a child’s diagnosis. It can be helpful to know that there are hundreds of other families in the PH community who have developed coping strategies that have helped them adapt to PH-related changes and move forward. As a parent, your first priority during this transitional period may be to focus attention on your child. Remember that while this is an important instinct, it’s also crucial that you take the time to acknowledge and reflect upon the ways in which this news affects you. Staying attentive to your own feelings and needs will make you more capable of tending to your child’s needs going forward. Here are a few ideas for coping as a parent of a child with PH:
Know that your child’s PH is not your fault. Parents sometimes blame themselves for their child’s diagnosis. You might feel guilty that you didn’t notice the symptoms or take your child to a specialist sooner. Give yourself permission to feel angry, sad, afraid, confused, or whatever you need to feel, but try not to dwell on “what ifs” and “if onlys.” These are very common responses to a child’s illness but the fact of the matter is that you are not to blame.
Take care of yourself. Data from limited studies suggest that better parental quality of life can directly enhance the quality of life of children with PH. In other words, if you want care for your child well, you need to care for yourself first. Parents who get enough sleep, exercise, and eat balanced, nutritious meals are in a better position to cope with the stress and demands of PH. Schedule in social time with friends, activities that you find fun and relaxing, and time away from your children to give yourself time to recharge. One mother recommended, “Yoga, church, quiet walks outdoors, journals, candles, music … explore all the resources to keep yourself mentally, spiritually and physically sound. Start with yourself and the rest will fall into place.”
Ask for and accept help. Parents often want to do everything for a sick child. But the demands of PH can be so profound that it’s crucial that you allow others to help from time to time. In most cases, friends and family are eager to pitch in, but they might not know how to go about it. Here are a few guidelines to help you ask for assistance:
- Consider the other person’s abilities, interests and availability.
- Don’t ask the same person for help repeatedly.
- Prepare a list of things that need to be done (driving kids to school or activities, making meals, babysitting, etc.) and let the other person choose what suits him or her best.
- Be prepared for a “no,” or hesitation. Accept it, but if the person gives you an opening, ask another time.
- Don’t weaken your request — be clear about what you need, including how important it is to you and the amount of time that help would be needed.
Reach out for support. Connecting with other families who have been living with PH for a long time can be a valuable source of information, support and strength. PHA offers email and telephone support groups for parents of children with PH, parent email mentors, and national and regional conferences where you can meet other families face-to-face (see Additional Resources). Many families also benefit from the emotional support of clergy, school teachers, primary care physicians, child-life services, social workers, and psychologists or psychotherapists.
Establish routines. Get in a routine at home to cut back on stress around the house. Having set times for cleaning, cooking and family time can cut back on indecision, disorder and parental guilt. Routines also allow you to identify high-stress times in your day and make small changes so those pockets of time become more manageable. If mornings are particularly busy or stressful, consider packing lunches and showering at night so you can focus on getting your children ready before school. You can also develop routines around hospital visits to reduce stress. Make plans for meals and snacks in advance, and arrange for visits from friends and family. Familiar faces can take some of the worry out of stressful experiences.
Get organized. You can also cut back on day-to-day stress by taking steps to reestablish influence over aspects of your life that are within your control. Get a detailed calendar or organizer to keep track of appointments, scheduled events, and changes to “normal” school or other activities. Use a journal, notebook or three-ring binder to keep track of medical contacts, instructions, medications, symptoms and other events in your life that are worth recording for your child’s medical team. Visit PHA’s Empowered Patient Online Toolkit to get started (see Additional Resources).
Try new things. Some families need to cut back on sports, travel and other activities made difficult by a PH patient’s oxygen or medication delivery. But new, shared activities can bring families together and give the child with PH a new focus post-diagnosis. Replace biking trips with board game nights and football games with charades. Creative activities can build self-esteem and nurture life-long family interests. Consider arts and crafts, sewing, woodworking, gardening, collecting, bird watching, music lessons or foreign languages. You can also talk to your child’s doctor about the possibility of introducing sports with lower cardiovascular demands such as golf, bowling, table tennis, or certain video games.
Tend to all your relationships. PH changes life for the child with PH, healthy siblings, parents, and even extended family. While it can be tempting to pour your mental and physical energy into the care of the child who’s been diagnosed, it’s important to pay attention to everyone in your family. Read on for more suggestions for helping your children cope, tending to your relationship with your partner, and communicating with your co-parent about PH. You can also visit www.PHAssociation.org/Parents for more information on coping as a family with PH.
- Parent-to-parent email group, telephone support group and mentors
- PHA’s regional and national education programs
- PHA’s Empowered Patient Online Toolkit
- Information on managing caregiver stress
- “Stress Management for Parents” from the Child Development Institute
- More Than a Mom: Living a Full and Balanced Life When Your Child Has Special Needs, Amy Baskin and Heather Fawcett (Woodbine House, 2006)
By Mary P. Mullen, MD, PhD, Associate Director, Pulmonary Hypertension Service at Children’s Hospital, Boston, Mass. and Assistant Professor of Pediatrics at Harvard Medical School.