Talking About Your Child's pulmonary hypertension with Your Significant Other

Dianna and LilyDianna with her daughter Lily

Denial isn’t just a river in Egypt. It’s also something you run up against when someone doesn't want to believe, or simply can't understand, that a loved one is suffering from a lifethreatening disease.

I got my first taste of denial when my daughter Lily was diagnosed with a ventricular septal defect and I was told that she would need surgery. My boyfriend would not acknowledge how serious the situation was; he believed that if he didn't think about Lily’s upcoming surgery, then it didn't exist.

When Lily was in post-op after her surgery, my boyfriend asked me, "Was there a chance she couldn't make it?" When I replied yes, he said that he'd thought so, but hadn’t asked the question because he was afraid of the answer. I was frustrated with him, but I thought that since Lily was going to be healthy after her surgery, I wouldn’t need to worry about his denial. But Lily's pressures in her heart didn't go down, and she was diagnosed with pulmonary hypertension.

My boyfriend went to some of Lily’s doctor appointments. He would nod, agree, ask a few simple questions, and when we got in the car, he would ask me to explain what the doctor had said. He is very intelligent, but he felt like the doctors were speaking in a foreign language. I learned to use simple terms when relaying information about Lily’s health to my boyfriend and other family members.

Even when my boyfriend understood Lily’s condition, he didn't “get it.” When Lily began having blue spells, her doctor prescribed 24-hour oxygen. My boyfriend would put her on oxygen in the house, but refused to put her on oxygen when they went out. He didn't seem to comprehend that 24-hour oxygen meant oxygen all the time. It was frustrating.

I tried talking to him about keeping Lily on oxygen when they went out, and he told me that he'd never noticed her turning blue. In the same breath, he also told me that he never looked for it. That blew my mind. He knew Lily had a life-threatening disease that affected the heart and lungs, but he wasn't on the lookout for her to have blue spells? He said that the babysitter had never mentioned Lily turning blue. I pointed out that just that day, the babysitter had said Lily was turning ashy, and that “turning blue” didn't mean she went Smurf-like. I was at the end of my rope with him. Whenever I tried to explain Lily’s condition in depth, he brushed it off. I even gave him the scary statistics. Nothing seemed to work. He recognized how important it was that she have her medicine on time, but he didn't see why oxygen mattered so much.

I finally turned to the PH Family group on Facebook (a private Facebook group for members of the PH community), and asked for suggestions. The group helped me find another way to relay information about 24-hour oxygen. One night, I casually mentioned that I had read that when someone turns blue, it means their oxygen levels are already really bad, and I explained some of the other effects that can go along with turning blue. That got the message across! I didn't realize I’d made a breakthrough until the next day when he took Lily to the store with him and put on her oxygen for the trip. I don't know if I wore him down with all the information, if he needed time to accept it, or if he really hadn’t understood that when Lily is turning blue, she is already in real danger. From then on, I saw steady improvement in his attention to making sure she was on oxygen.

I'm still dealing with this problem of denial when I try to explain the severity of Lily's disease to other people. What I have discovered is that the same thing does not work for every person. With some people, I need to describe pulmonary hypertension as scientifically as I am able to. For others, I have to give examples of how it affects her. Some people don’t “get it” until I lose my temper.

My boyfriend and I still run into bumps whenever Lily’s doctors give us new information, and I still have to explain things to him, but I'm glad we finally overcame this one particular hurdle. It gives me more energy to concentrate on all the other ones!

By Dianna McGlone, Parent of a Child with PH

 

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