Your child’s pulmonary hypertension (PH) diagnosis is a life-changing event for you and your child. A PH diagnosis can resolve questions about the symptoms your child has been experiencing, and the answers the medical team needs to start treatment that relieves symptoms and slows disease progression. But PH is a serious illness that introduces difficult changes and challenges.
Life changes can range from small inconveniences to major shifts in a family’s organization to profound worries about the future. Families of a child with PH may face daily life challenges and new significant health-related responsibilities such as:
- Learning new medical terms.
- Coordinating and taking your child to doctors’ visits.
- Managing complex medications that require constant monitoring.
- Helping your child through medical procedures.
- Explaining PH to family, friends, colleagues and teachers.
- Disruptions to daily schedules to accommodate medical appointments and hospitalizations.
- Becoming a stay-at-home caregiver.
- Moving to be at a lower altitude or nearer to your child’s PH clinic.
- Making lifestyle changes to accommodate financial need or your child’s physical ability.
Stress can build up and, if left unaddressed, may lead to caregiver burnout, chronic anxiety or other mental health challenges. If your child has been diagnosed with PH, 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.
As a parent, you may be anxious in the short-term, worrying about upcoming tests and procedures, and in the long-term, fearing for what the future holds for your child with PH. You may experience a looming fear of illness and death even when your 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.
The year following a child’s diagnosis can be overwhelming. Hundreds of other families in the PH community have developed coping strategies that may help you and your family adapt to PH-related changes.
As a parent, your first priority during this transitional period may be to focus attention on your child. While this is an important instinct, it’s crucial to acknowledge and reflect upon the ways this news affects you. Staying attentive to your own feelings and needs will make you more capable of tending to your child’s needs.
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 or confused, but try not to dwell on “what ifs” and “if onlys.”
Take care of yourself. Parents who get enough sleep, exercise and eat balanced, nutritious meals are better able 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 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.
- Consider the other person’s abilities, interests and availability.
- Don’t repeatedly ask the same person for help.
- 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 support through telephone support groups for parents of children with PH, email support, a parents Facebook group and national and regional conferences where you can meet other families face-to-face. Many families also benefit from the emotional support of clergy, schoolteachers, 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. If mornings are particularly busy or stressful, try 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. Take steps to reestablish influence over aspects of your life that are within your control. Get a detailed calendar or online organizer to keep track of appointments and events. Use a journal, online organizer or three-ring binder to keep track of medical contacts, instructions, medications, symptoms and other events that are worth recording for your child’s medical team. Maintain access to your child’s electronic medical records and don’t hesitate to communicate with your child’s providers with any concerns or questions.
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. Instead, engage in activities to bring families together and give your child with PH a new focus. 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 or music lessons. 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 you might find using all your mental and physical energy for the child who’s been diagnosed, it’s important to pay attention to the rest of your family. Help your other children cope, tend to your relationship with your partner and communicate with your co-parent about PH. You can also visit our Parents web page for more information on coping as a family with PH.
Thank you to Mary P. Mullen, M.D., Ph.D., Associate Director, Pulmonary Hypertension Service at Children’s Hospital, Boston, Mass. and Assistant Professor of Pediatrics at Harvard Medical School.