Co-Parenting a Child with Pulmonary Hypertension

“We were scared and we really weren’t sure if we could handle it at first.”

“It isn’t always easy, but we don’t talk about it much. I always figured it didn’t affect my husband like it affects me.”

“When our daughter was first diagnosed, he wanted more to do with her medical stuff. Now, because of her medical and developmental delays, he is harder on her. He says he’s preparing her for a normal life. I tend to be more lax, maybe because at some level I feel guilty for all of this.”

What to Expect

Ava and her family

Parenting a child who has pulmonary hypertension can feel like riding a rollercoaster with no exit, enjoying some exhilarating highs while also fearing the long, unexpected drops.

On one hand, raising a child with PH can offer unexpected gifts: inner strength, perspective that directs our attention to the “big things,” the support and love of friends and family. It also offers many challenges, including fear for the future, unexpected hospitalizations, emotional highs and lows, disrupted schedules and plans, dynamic priority shifts, and burdensome medical expenses. These challenges can lead to conflict between you and your partner, even within the strongest of relationships.

It is common for two parents to have different parenting and coping styles. In families with a chronically ill child, these differences can lead to unspoken tensions and assumptions on both sides. One parent may focus primarily on the day-to-day needs of the child, while another may focus attention on concrete tasks during difficult times, such as keeping up with 9-to-5 employment to maintain uninterrupted medical insurance, making repairs around the house to better accommodate the child with PH, or remaining focused on the future needs of the entire family. While all of these jobs are necessary to sustain family stability, a lack of appreciation for the value of the other partner’s approach can lead to conflict.

Similarly, one parent may reach out to family and friends for support, while the other may need time alone to process their feelings and reactions. It is important to recognize and accept that everyone copes differently and processes life events at their own speed. While you may be on a loop on the rollercoaster of your family’s PH journey, your partner may be on a smooth flat.

As your child grows, you and your partner will encounter new challenges as PH continues to affect your child and your family in different ways. You may find yourself questioning your partner’s level of commitment and competence, or entertaining other fears and concerns to emerge in light of your child’s illness. Though every family and relationship has its own ways of dealing with chronic illness, communication is critical.

Moving Forward: Caring and Communicating

Wherever you and your family are in your journey with PH, there are things you can do to encourage an open dialogue with your co-parent about your concerns, fears, challenges, and day-to-day responsibilities. If you aren’t in the habit of talking about these issues on a regular basis, take the time to prepare for an initial discussion to lay a positive foundation for the future.

Don’t wait for an emergency to talk. Sit down with your partner to discuss your child’s needs when there is NOT a crisis. You will both be able to think more clearly when you are not reacting to an immediate concern or need.
Be honest. Talk about what the future may hold: for you, your relationship, and obviously, your child.
Establish roles and responsibilities. By talking about who will take responsibility for what, you can save time and avoid miscommunications. Are there strengths that you bring to the table that naturally align with your child’s needs? Are there areas where you struggle, but your significant other is a natural and may be willing to take the lead? For example, if you’re a born organizer but your partner hates talking on the phone, you might coordinate appointments and medication deliveries while your partner takes on the task of paying bills.
Be flexible. The parenting plan that works in January may not be the plan that works in September. One parent recommends, “Discuss PH and its challenges regularly. Be accepting to the constant changes in care. Acceptance is easier than being irritated.”
Be sure you both know the essentials. From a practical perspective, be sure that you and your partner both know what to do in a crisis. Review the basics of your child’s PH together. Make sure that you’re both familiar with your child’s medications, what symptoms and side effects demand immediate action, and who to call in the event of an emergency. To stay on the same page regarding these issues, make a point of attending clinic visits, support groups, and related appointments together whenever possible. Attend teacher conferences and sporting events together at well to demonstrate how all of these functions can co-exist.
Trust your instincts. If the conversation is obviously not going well, ask to put it off until another time. Don’t put your feelings on the line if you’re not both in a place where you’re capable of showing one another respect and giving the conversation the time it deserves. Return to the discussion when you both feel ready.
Make time for your child and your relationship. Attend to your own emotional needs as well as the practical and emotional needs of your child in this conversation. Your child likely will not always require complete, undivided attention (and, face it, kids will WANT some autonomy). Your relationship(s) with others are critical to your resiliency and ability to cope. Talk about what it takes for each of you to recharge, and find ways to accommodate your needs during your average day or week. Think about scheduling a standing “date night” for you to spend time together without your child(ren), as well as alone time for each of you.
Keep talking. Make check-ins with one another about your child’s PH a regular part of your household routine.

If you are responsible for your child’s day-to-day disease management…

Come to the conversation ready to accept help. You likely know the ins and outs of your child’s day-to-day needs, and you may feel that you can handle most of the caregiving responsibilities by yourself. Still, it is often helpful and comforting to have someone to share events with. Tell your partner why you want to include him or her, and what you’d like out of this conversation. Your knowledge is bound to instill confidence and respect, and honesty is so often rewarded with the support one needs.
Put yourself in your partner’s shoes. Recognize that while you may have already adapted to many aspects of your child’s illness, your partner may still be experiencing feelings of shock, fear, reluctance and grief. You likely had some of the same emotions (and maybe even still do), and needed to take time to process them. Your partner may be at a different stage in processing, accepting and coping with your child’s diagnosis, particularly if new health concerns develop.
Educate your partner. Remember, you are an expert on this topic! Give your partner some examples of how you do what you do. Focus on your strengths, and then give him or her a chance to do the same. Remind each other that the qualities that drew you together were likely based on your values, priorities and characteristics that can help you manage your child’s PH.
Be yourself. Be the advocate you are for your child, and that will transcend the boundaries of other relationships in ways that are positive and build respect. It may be a challenging series of discussions, but the benefits that result will be invaluable. Your child will have another “expert” in his or her team of supporters, and you will have a renewed sense of confidence as a parent, partner and caregiver.

If you are typically less involved with your child’s disease management…

Put your child’s well-being first. It’s common to be afraid of what you don’t know. If you want to be a bigger part of your child’s caregiving team, the best way to overcome your fears is to learn everything you can about the child’s illness and needs. Make every effort to attend doctors’ appointments and meetings with school personnel. One parent of a child with PH advises, “Get involved and stay involved. The level of knowledge you possess will allow you to intelligently discuss pulmonary hypertension with your child and spouse. Participate in doctors’ visits and medicine updates. This on-going training could very well save your child’s life.”
Be supportive. Many primary caregivers get so wrapped up in the demanding day-to-day responsibilities of caring for a child with PH that they begin to feel drained, overwhelmed, and underappreciated. Take the time to express your appreciation for everything your partner does for your little one and your family. Ask your partner what you can do to help, and then make every effort to follow through on your commitments.
Ask questions. Your partner is a valuable source of information about pulmonary hypertension, your child’s needs and your child’s medications. There are no stupid questions; don’t be embarrassed to inquire about something you feel you should already know. The most important thing is that you know what you need to know to care for and nurture your child. Your partner will appreciate that you’re committed to being an active member of your child’s caregiving team.

While there is no guarantee of what the future holds, you do what you can to normalize, champion and survive the impacts of PH with each person in your family. With consistent effort, you can learn to sustain yourselves through the ups and downs, and balance the routine stressors of life with the joy and love of family.

Additional Resources

Parenting Children With Health Issues: Essential Tools, Tips, and Tactics for Raising Kids with Chronic Illness, Medical Conditions & Special Healthcare Needs, by Foster W. Cline, MD and Lisa C. Greene (Love and Logic, 2007)
One mother shares her take on communicating about PH with a significant other. Read more
Sometimes the best advice and support can come from people who understand what you’re going through. PHA hosts a monthly Parents Telephone Support Group, a parent-to-parent email group, and PH Email Mentors especially for parents. Learn more

This article was written by Allyson Rupp, LCSW and Darci Albrecht, LCSW, of the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford in Stanford, Calif.