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WhenaDeadlyDiseasePreventsYouFromBecomingaParent

Serena Lawrence
Serena Lawrence Freelance Writer and Editor
7mo Canada Story
When a Deadly Disease Prevents You From Becoming a Parent

Women with pulmonary hypertension (PH) are advised against pregnancy because of the associated risks. It’s difficult to articulate the loss one feels over something they never had. I never had a child (nor did I lose one), but losing the ability to get pregnant is painful in a way where you grieve and mourn. Although no one has physically died, it feels as if a death has happened.

Suddenly the dreams of painting with my son or daughter, opening gifts on Christmas morning and reading them a story before bed (like my parents had done for me) are all gone. Throughout this experience, my friends and family have assured me that although I am sick, I am still the same person. The truth is, you cannot go through something like this and stay the same person. It changes you.

Being a product of Generation Y, I have witnessed the birth and growth of social media. I have witnessed an age with oversharing — yet there is still a stigma around sharing anything unpleasant like loss. I shared on my blog that I haven’t been ready to meet any of my friends’ and families’ babies yet.

Pregnancy for women with PH increases the risk of death for both the mother and child. Almost every organ is affected by pregnancy. For example, the most notable change is the increase in blood volume within the cardiovascular system, which is something that could be potentially fatal for someone with PH.

Not being able to get pregnant because of a disease is weird and complex. It is frustrating because many of us with PH can be fertile. This means if I were to get pregnant, it would not be a happy miracle (like most circumstances where someone cannot get pregnant due to fertility issues.) It could turn into a life or death situation. As a feminist, I also realize how heavily society places being a mother on women. Part of me fears that I will never be a good enough partner because I cannot provide a biological family along with all the other worries associated with PH.

At age 25, I was advised that I had PH, and that pregnancy would carry over an 80% percent fatality rate for someone like me. It was a few days before Christmas. I had also just found out that I had stage 3-4 PH, and that I had maybe five to 10 years to live. At this point, I was given too many losses all at once. While I knew I wanted children, I also knew I could not deal with that emotional blow at that time. My main priority had to be getting better, so I tried my best to focus my attention on that. I stored the emotional loss somewhere buried in my mind to deal with once I was better equipped to do so.

Several months had passed after diagnosis. The first winter after diagnosis felt long and the days melted together. When the snow had melted, I was sent to see a gynecologist at the recommendation of my specialist. It seemed like every doctor was worried about me getting pregnant — as if I could get pregnant as easily as one catches a cold. At this point I was so sick I was using motorized scooters in the mall, relied on the help of my mother to change out of my sweatpants into my pajamas, and I couldn’t shower. Getting pregnant was just about as likely as me passing grade 10 math. (Spoiler alert: I didn’t pass grade 10 math.) I called the gynecologist’s office in advance to warn them that it was simply too soon to talk about my situation. However, I believed that I was showing signs of a hormone problem and would like to discuss that with then. I was told this was fine, and I went for my appointment.

I went to the appointment with my father. The building did not have any accessible parking, so we had to park half a block away from the building. It was at this point that I knew the appointment was not going to go as planned. The office was painted in soft colors — colors that had faded over time in the dated office. To the right was a Fisher-Price child-sized plastic house covered in sticky finger prints. Behind the activity center was a collage of all the babies delivered by the doctor’s from the office I was in. The collage expanded across the wall, engulfing the entire office. I watched pregnant women come in and out of the office. I realized this was an office most women went to for something happy and joyous. It was not set up or designed for someone in my position. Instead it was a painful reminder of all the things I cannot have. I slumped into a chair, trying to hold back tears. I grabbed a pamphlet to distract myself. The pamphlet was about saving the stem cells from umbilical cords to help with various diseases like cancer. At this point I couldn’t hold back my tears. I couldn’t have a baby or stem cell therapy (which I feel could possibly help some forms of PH, but what do I know? I only went to school for Fine Arts.).

Eventually I was called back to see a nurse for preliminary testing before I saw the doctor. The nurse asked how I was dealing with my diagnosis. That was a question I had been asked a lot in the months prior. It was a question I wished people didn’t ask because there was no good way to answer. It turned out the doctor I was supposed to see had a brain aneurysm and was off to recover. In her place was a doctor not much older than myself. My previous phone call advising that it was too soon to discuss my current situation was out the window. She showed me different diagrams and pamphlets to ensure pregnancy never happened. I broke down and really started crying. I was ugly crying. She handed me a box of tissues and called me “sweetie.” It was the first time it felt like a doctor a could slightly understand what I was going through. Nearly every woman could imagine what it would be like to find out they could not get pregnant.

However, she still had a job to do. I turned down all contraception methods that contained hormones. I didn’t feel comfortable taking any more medication, especially something that contained hormones. I asked about having tubal ligation done, but she recommended that I stay awake for the surgery because anesthesia is usually avoided for people with PH. I left doctor’s office that day without anything but a bigger emotional wound. Again, I told myself to focus on getting better and worry about this later. I had to prioritize my loses and gain back whatever pieces I could.

Now at 28, I imagined myself married and working towards having children in the next year or two. In reality, I live at home with my parents (if I call them my roommates, it doesn’t sound as bad, right?), left my job and alternate between sweatpants (a.k.a. daytime pajamas) and actual pajamas to sleep in. My years at university did not prepare me for this, but nothing really could have.

I realize getting pregnant isn’t the only way to have children. There is adoption and surrogacy. Adoption has always been more of a desire of mine than having, even before I was diagnosed with PH. As someone who is still fairly newly diagnosed, I still have a lot of fears and concerns about having children. It pains me to think I would not get to be the mother I want to be or that I may not get to be here for all of the milestones. I wouldn’t want anyone to resent me if I could not be the mother I dream of or couldn’t be there to see their first day of school or their wedding. Thinking about it now puts a pit in my stomach. For me, the greatest loss isn’t that I can’t have biological children. The greatest loss is that I feel like I can’t or shouldn’t have a family. As if I can’t invest in my future. Maybe these (reasonable) fears are something that will fade overtime, but for now I feel like there is still a lot of uncertainty surrounding my health and future.

This isn’t to say if you have PH that you cannot have a family. There have been several women who have shared their stories about adopting, and they have wonderful families. I have also spoken to a few ladies with PH who have gotten pregnant and have given birth after diagnosis. There are more and more successful stories for women with PH who have given birth. I just felt it was important to share my voice and experience about this difficult topic because it is fairly taboo to talk about this publicly.

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3 comments

  • Courtney Dercqu
    Courtney Dercqu Influencer
    7mo ago

    You have so much courage to share your story. Many people will benefit from it. Since you have been so raw in your article, I will do so too. A little over a year and a half ago, I had a MRI done for a cyst I had near my spinal cord. As someone who was born with an association of Spinal Bifida, I thought something to that affect was resurfacing. I went to the doctor, who did everything but to calm my fears, and saw that my MRI showed a uterine abnormality. I asked her what it was, and she said it wasn't her specialty. So, naturally, I headed to the internet, which can be a frightening place when you're unsure of what you're dealing with. I have a septate uterus, which means that I have a higher risk of first and second trimester miscarriage. But, before I had my diagnosis, I spent a month waiting for an answer from someone. My ex had recently had a baby, and I remember screaming at the top of my lungs, throwing a teddy bear across the room, saying to my fiancé that it was unfair he had one, and I was facing this. The uncertainty was the worst. Immediately, as I drove home that day, that image I had of carrying a baby full term, or even birthing a healthy child, disappeared from my thoughts. I had never felt more alone, and terrified, and it didn't matter when my fiancé said we could adopt; I wanted to experience pregnancy. I wanted to know what it felt like. I understand how you feel in the sense of that fear and uncertainty. Your voice, especially being shared here, speaks volumes to those who also carry that fear for a multitude of reasons. You are not alone.

    You have so much courage to share your story. Many people will benefit from it. Since you have been so raw in your article, I will do so too. A little over a year and a half ago, I had a MRI done for a cyst I had near my spinal cord. As someone who was born with an association of Spinal Bifida, I thought something to that affect was resurfacing. I went to the doctor, who did everything but to calm my fears, and saw that my MRI showed a uterine abnormality. I asked her what it was, and she said it wasn't her specialty. So, naturally, I headed to the internet, which can be a frightening place when you're unsure of what you're dealing with. I have a septate uterus, which means that I have a higher risk of first and second trimester miscarriage. But, before I had my diagnosis, I spent a month waiting for an answer from someone. My ex had recently had a baby, and I remember screaming at the top of my lungs, throwing a teddy bear across the room, saying to my fiancé that it was unfair he had one, and I was facing this. The uncertainty was the worst. Immediately, as I drove home that day, that image I had of carrying a baby full term, or even birthing a healthy child, disappeared from my thoughts. I had never felt more alone, and terrified, and it didn't matter when my fiancé said we could adopt; I wanted to experience pregnancy. I wanted to know what it felt like. I understand how you feel in the sense of that fear and uncertainty. Your voice, especially being shared here, speaks volumes to those who also carry that fear for a multitude of reasons. You are not alone.

    • Serena Lawrence
      Serena Lawrence Freelance Writer and Editor
      7mo ago

      Wow! I am so glad you shared a bit of your story with me. I found out two weeks I have a septum as well, along with multiple cysts and endometriosis. I asked my boyfriend if there were support groups for people with uterine septums, so it is very comforting to hear from someone with the same issue! (I was planning on sharing a bit about that in another post next week on here.) I was warned about the risks of pregnancy with the septum, on top of PH! I couldn't believe it (it felt like someone, somewhere, REALLY doesn't want me to have kids.) Surgery could help correct it, but surgery is really risky for someone with PH. I hope that option could be available to you, should you decide to go down that route. I understand what you mean about not getting to experience things. I am scared to adopt because of the low life expectancy with PH, but there is a certain kind loss and grief experienced that isn't discussed enough for women who are advised against pregnancy because of a condition. I am sorry to hear that you have and are experiencing that kind of loss. Thank you again for sharing, it made me fell less alone about the whole septum in the uterus thing. I hope that you are still able to fulfill your desire of being a parent, even if you have to take a different path to get to your goal.

      Wow! I am so glad you shared a bit of your story with me. I found out two weeks I have a septum as well, along with multiple cysts and endometriosis. I asked my boyfriend if there were support groups for people with uterine septums, so it is very comforting to hear from someone with the same issue! (I was planning on sharing a bit about that in another post next week on here.) I was warned about the risks of pregnancy with the septum, on top of PH! I couldn't believe it (it felt like someone, somewhere, REALLY doesn't want me to have kids.) Surgery could help correct it, but surgery is really risky for someone with PH. I hope that option could be available to you, should you decide to go down that route. I understand what you mean about not getting to experience things. I am scared to adopt because of the low life expectancy with PH, but there is a certain kind loss and grief experienced that isn't discussed enough for women who are advised against pregnancy because of a condition. I am sorry to hear that you have and are experiencing that kind of loss. Thank you again for sharing, it made me fell less alone about the whole septum in the uterus thing. I hope that you are still able to fulfill your desire of being a parent, even if you have to take a different path to get to your goal.

      • Courtney Dercqu
        Courtney Dercqu Influencer
        7mo ago

        Thank you so much for your kind words. Fear of what lies ahead of us, will always be there, but it should never stop us from pursuing those dreams we have. While that is SO much easier said than done, if you want to become a mom, even if it is through adoption, then you should do it. Life is about the moments, and we should focus less on the what ifs and more on the "right now." I wish you nothing but the absolute best.

        Thank you so much for your kind words. Fear of what lies ahead of us, will always be there, but it should never stop us from pursuing those dreams we have. While that is SO much easier said than done, if you want to become a mom, even if it is through adoption, then you should do it. Life is about the moments, and we should focus less on the what ifs and more on the "right now." I wish you nothing but the absolute best.


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Serena Lawrence
Freelance Writer and Editor

Tea snob and pastry enthusiast. Artist turned activist. Boston Terrier mama and bubble bath queen. Raising awareness, advocacy and patient support for pulmonary hypertension.

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