Your child’s pulmonary hypertension diagnosis is a life-changing event for you and your child. While a PH diagnosis can resolve questions about symptoms and treatment, you’ll be facing difficult changes and challenges as your child’s primary caregiver, such as: 

  • Understanding 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. 
  • 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. 

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  the future. You may experience a looming fear of illness and death even when your child is doing well. The losses associated with PH, from family activities to professional or community roles, can create a complicated grieving process. 

As a parent, your priority may be to focus attention on your child. While this is an important instinct, it’s crucial to acknowledge and reflect on 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. 

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. 

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.” 

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. 

Self-care

After your child’s diagnosis 

Our Coping Resources provide a community of parents that can help through email, online and in-person support.

Establish routines 

Get in a routine at home to cut back on stress. Routines can provide stability, a sense of security and open up time for unexpected delays.  

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.  

Educate yourself

Knowledge is power and will make you feel better prepared for your child’s questions as well as doctor’s visits. Take time to educate yourself on topics ranging from treatment and exercise to insurance and research.

PH and 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.

Helping children and teens with PH

Our information, resources and tips offer insights on how to manage your child’s illness throughout their childhood.

Get organized

Take steps to reestablish influence over aspects of your life that are within your control. 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.  Our Empowered Patient Tookit helps you keep track of medications and prepare for emergencies.

Empowered Patient Toolkit

Coping Resources

The Pulmonary Hypertension Association is home to a growing community of families with children affected by PH. Connect with others who share your experience and learn about the resources available to you as your family adjusts to life with this illness.