A pulmonary hypertension diagnosis in a child can be overwhelming for families. Parents often feel helpless or guilty that they can’t shield their child from pain, treatments, and the emotional impact of chronic illness. It’s normal to worry about your child’s physical and emotional well-being. 

Children also exhibit nonverbal behaviors that can signal confusion, distress or frustration. Pay attention to your child’s moods, facial expressions and body language. Whether or not they’re expressing them, many children have questions, either about their illness or the differences they observe between themselves and siblings or friends. Children may wonder why they can’t run as far as their friends or why they get so much special attention from adults.  

New challenges will arise as your child grows. Changes in health, doctor visits and transitions to school or adult care can all bring new stress. While helping your child understand and cope with all these ups and downs may feel overwhelming, remember that your role as a parent remains constant: to provide the love and support necessary for your child to grow and learn.  

Explaining PH to your child 

Talking to your child about PH depends on their age, maturity and curiosity. As with any sensitive topic, it’s a good idea to plan ahead and anticipate potential questions and stumbling blocks. If you have a co-parent, talk to him or her about how and when to have these conversations, and how much information you feel comfortable sharing when you do. 

Preschoolers need simple, concrete explanations. They may come to the conclusion that something they did caused their PH. Reassure them it’s not their fault. Use play, books, and toys to illustrate medical ideas. 

Elementary-age kids begin to visualize on an abstract level, but they may still blame themselves. Honest and clear explanations are important. Simple language such as “your heart works harder” can be helpful. Use clear language and invite ongoing conversations. Books, stories and movies are useful tools and can bring out children who are reluctant to share. 

Teens understand more complex ideas and may seek information independently. At this age, it’s OK to ask more leading questions to encourage conversation. Encourage questions and point them to reliable resources. Teen years are ideal for teaching them to manage their own care. 

Tips for every age 

At every age, try to be gentle, open and honest. If you don’t think your child is ready for certain details, that’s ok. Some parents find that their children’s questions are the best guide for what to tell and when. 

Children may ask difficult questions. As every parent knows all too well, sometimes children will take you off guard by asking something that you’re not prepared to talk about. Around the second grade, some children begin asking about death. Keep in mind that this is normal, even in healthy children.  

Be honest and open, and give your child the space to voice any fears and questions. Answer calmly, providing reassurance and space for conversation. Spiritual or family beliefs can also be part of the discussion. Be on the lookout for signs of confusion or distress, and turn to your PH team, your child’s school counselor, a therapist or clergy member if you or your child need extra support at any point. 

Appointments and hospital visits

Medical visits can be frightening. How much you share — and when — depends on your child’s age. Learn more on how to make an emergency plan and reduce stress during a medical appointments. 

Navigating medical appointments

Reducing stress at home 

Help your child feel like a regular kid. One of the easiest places to establish this sense of normalcy is at home. Talk about your expectations for good behavior and help around the house. One mom, Christine, created a list of chores she knew her daughter could complete successfully, PH and all. 

Make sure there are consequences if your child doesn’t meet your expectations and reward them for jobs well done. Get in a routine and stick with it. Having a predictable home life, with fairly consistent chores, meal times, bedtimes and activities, can counteract the stress and unpredictability of the ups and downs of PH.  

Encourage independence in health care gradually. Let your child manage small tasks like mixing medication or tracking symptoms. Over time, this builds confidence and prepares them for adult care. As children get older, their confidence will grow and they will feel empowered to make more and better choices.  

Remember that life with a chronic disease can be extremely stressful for a child, so it’s a good idea to keep the home environment as stress-free as possible. Avoid discussing stressful topics like bills or care disagreements within earshot of your child. Create a united front with your partner and medical team. You’ll be creating a safe and supportive atmosphere for your child. 

School, friends and fitting in 

School may feel risky, but it’s important for social and academic growth. Work with the school to ensure your child’s needs are met. PHA offers a School Resource Handbook to guide conversations with teachers and staff. Eventually your child can begin to participate in the process of educating teachers, counselors and coaches about PH. 

Help your child take ownership by involving them in meetings with educators. Most classmates are curious and supportive when they understand the illness. Children are naturally curious, so you might consider visiting the classroom to explain the basics of PH, oxygen or an infusion pump to your child’s classmates.  

Children with PH often form close friendships. Positive peer networks, at school and through PH communities, can be a vital support. Many kids get through tough times by making friends with other young people living with PH.  

Some parents coordinate visits to the PH doctor to coincide with the visits of other children with PH of similar ages. You can meet other children through PHA’s pediatric support groups or by reaching out to a PHA mentor. Attending PHA’s biennial International PH Conference is another great way for children to meet other kids who understand what they’re going through.   

Teens with PH

Teenagers may struggle more with feeling different. Open communication about independence, risk behaviors, and emotions is vital. Encourage teens to ask questions and share concerns. Periods of denial or some non-compliance are also normal in teens.

Teens with PH