Talking About PH with My Kids

By Pamela Garcia, Parent of a Child with PH

The Garcia Family

The Garcia Family

I’ll always remember the day my daughter, Julie, was diagnosed with pulmonary hypertension at age 11, nearly five years ago. The cardiologist asked us to step outside to talk. I tried to compose myself before returning to Julie, but I wasn’t sure how to answer her questions. But let’s face it — as parents, we are often expected to perform without preparation.

My daughter is very intuitive and often surprises me with how well she comprehends things. So it was important to remain open and honest, and I believe that every child deserves to be treated with the same respect you would want for yourself. Even when she didn’t ask questions about her diagnosis, I would still try to break down new information and explain it to her. My son had questions, too, but he pulled away from discussions. Instead, we had one-on-one conversations to explain his sister’s health and ask if he had any concerns. I continue to encourage the kids to log their questions in a notebook.

Getting the Hang of It as a Family

As the kids grew older, it was still important for us to share information about Julie’s treatment. But more importantly, I armed them with resources. We bought a Merck medical guide, PHA’s Pulmonary Hypertension: A Patient’s Survival Guide and an anatomy book and made a list of reliable websites such as PHA and the Mayo Clinic. We take our daughter to support groups. As she grows older, we include her in medical discussions, even if it is as basic as asking, “What time works better for you, morning or evening?” Involving her in these decisions lets her feel that she has some control over things. When she has medical procedures, our whole family is there so that she can feel our support, but we respect her wishes if she doesn’t want us all in the room. As she gets older, she still appreciates having someone with her.

Preparing for doctor’s visits was and is challenging for us. How do you motivate your child to go to the clinic? When my daughter was younger, I would tell her the night before we were going. Now that she is older I have to tell her further in advance so that she doesn’t make conflicting plans. When she was young and new to the procedures, I would explain them to her so there wouldn’t be a scary surprise. Now that she is older she doesn’t want all the details or the suspenseful countdown. I only tell my son what the procedure will be if he asks. If I don’t know the answer, I tell him that we will research it later together. We usually try to plan for something fun afterwards that involves the whole family.

Addressing Being Different

In the beginning it was hard for Julie because she wanted to play competitive sports with her friends. I try to teach my kids that sometimes it is better to stand out from the crowd and be different. I don’t want my kids to focus on what they can’t do. I want them to be challenged and to always find the “can do’s” in life. I want my kids to know that you should never give up, but that some of the greatest ideas have come from those who tried new things. I often use Albert Einstein as a motivator. He knew that sometimes you have to break free from the crowd to discover a new perspective.

We set out on a mission to find new interests. I bought Julie a camera and enrolled her in a photography class. I started a blog and a YouTube account, where Julie could get unbiased feedback on her work. Before we knew it, we were having so much fun learning to play ukulele and making homemade beauty products. Julie began cooking and ballet lessons and met new friends. We volunteered to help others and found we were the ones who learned great lessons. I wouldn’t wish it on anyone, but in a way having PH in our lives has given us the courage to find ourselves. We have discovered so many untapped talents which would have remained unlocked if we weren’t forced to explore new options. The sky is most certainly not the limit, and neither is my daughter’s PH.

This article originally appeared in the Fall 2012 issue of Pathlight.