Saying No, for Now, to Being a Parent with PH

I was diagnosed with pulmonary hypertension on the cusp of my adult life gaining its sea legs. After working a lot of crummy jobs while a university student, I had landed my first adult job with good pay and even better benefits. This was no small feat, because I went to school for fine arts in a tech-based city with tons of overqualified graduates from nearby universities. I was saving up for my first real place, and although my boyfriend is three years younger than me, we were talking about our future. We wanted to get married and have one child (we are both only children and think it rules) once we had a couple of years to establish ourselves. In June 2013, my boyfriend accompanied me on a flight to Montreal for my weeklong job training. By December, I had stopped breathing in my sleep several times and was going to the ER on a regular basis. Just before Christmas I was told I had stage 3/4 pulmonary hypertension. Needless to say, pulmonary hypertension was like a hurricane that picked up all my plans and threw them out of my life with a tumultuous force.

I sat on a hospital bed while a pulmonary hypertension specialist began to tell me about the disease and detail its devastation. One the things he said was that I should not get pregnant, due to the high mortality risk for women with this disease. Pregnancy affects nearly every organ, but perhaps one its most dangerous aspects is the increase in blood volume within the cardiovascular system, which could be fatal for someone with pulmonary hypertension. I was also warned that many medications to help treat pulmonary hypertension can cause terrible birth defects.

That was okay, I thought. I always wanted to adopt anyway! Then he told me about the average lifespan for someone with PH, and told me my prognosis. My sheer optimism turned into skepticism. Maybe it would be wrong for me to be a parent through adoption. I had previously worked in childcare and worked with a few foster children and children who were adopted. I saw what a lovely and beautiful opportunity adoption could be for families. I had also studied education in university. I really wanted to be a mom someday.

As a young adult, I have witnessed many of my friends go on and do great things with their lives as they continue to grow. I am extremely happy to see my friends get married, travel, and have babies. At the same time, it can be a little difficult for me to see. Part of me mourns the loss of something I never had. A baby. I also fear that as my boyfriend grows older he will mourn the loss something we never had. Sometimes I worry I will be unlovable or an unideal partner, because I can’t give him a lot of the things we planned for before I got sick.

I am mourning the loss of the family and the life I thought I would have. Unfortunately, not many of the people around me understand this loss. I have had a few tell me to get over it, and suck it up before I lose the relationships I’ve built. But the problem is that pulmonary hypertension has caused so many losses. My career. My health. My body. My future. I still ache over what I thought could have been my future. There is a void that I feel will get bigger as I age. I am not able to get pregnant due to a high mortality risk, and if I did, pregnancy would not be considered a happy miracle (like for those who overcome fertility problems). For me, and others like me, it would turn into a life or death situation.

I went to a doctor’s appointment in March to see a rheumatologist, who placed me on another medication that causes birth defects. Again, I was warned not to get pregnant. I did something I try not to do at doctor appointments. I began to tear up, and I told her that I wasn’t supposed to have children anyway and I am too scared to adopt because of my dreaded life expectancy. At that moment, she began to talk to me a way none of my other specialists have. She talked to me like someone having a very difficult human experience. She put her arm around me, handed me a tissue, and said, “It is just a ‘no’ for now. Things could change in the future.” She began to talk of her pulmonary hypertension patients who have had families through childbirth and through adoption. I have also had the opportunity to speak to several women who have adopted children after diagnosis, a few women with pulmonary hypertension who have given birth, and another who has had a child through surrogacy. I know it isn’t possible for everyone, but maybe being a parent will be possible for me someday.

I still have a lot of fears and reservations about being a parent. I am only 2.5 years post-diagnosis. I don’t really know what the future holds from me, and I have heard a lot of conflicting things from specialists because my diagnosis still seems like a bit of a mystery. Perhaps that is what I mourn the most. That stability and hopefulness I used to feel when I planned for my future. Now, post-diagnosis, my future feels like a giant question mark. I feel cautious to plan for anything. For me, the biggest loss isn’t the inability to have biological children. The great loss for me is that I feel as if I couldn’t or shouldn’t have a family, because my future in terms of my health is currently uncertain.

But, that isn’t the say wonderful things won’t happen. Maybe it is just a ‘no’ for now.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Pulmonary Hypertension.