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    • #13544
      Kimberly van Soest

        As most of you know, PH is a disease with many limitations. As a female young adult, one of the most drastic limitation was/is that getting pregnant. Although I am only 20, ever since I was little, I imagined the joy of once becoming a mom myself. However, I believe that getting pregnant should both be favorable for the mom as well as the child.

        I wonder what your thoughts are on this topic? Would you get pregnant if you were to have a higher risk? Or did you get diagnosed during your pregnancy and given the choice to terminate your pregnancy? Or would you still consider getting pregnant after a transplant, while not knowing how much time you have left?

        I know this is a sensative topic, so thank you in advance for sharing your story/opinions!

      • #13547
        Kathleen Sheffer

          Great topic! I know quite a few PH moms who are thriving. It’s a personal choice that should be discussed with your medical team. I’ve thought about the topic a lot over the years and my emotions around pregnancy and motherhood are still evolving.

          Knowing I was born with two genetic conditions (not necessarily hereditary, but still), I worry about the possibility of passing one on to a child. I also worry about the effects of the medications I’ve taken over the past 25 years.

          Personally, I’ve always been drawn to adoption. It has the potential to be transformative for both the child and the parents. Instead of jeopardizing my health, I could channel my energy into caring for a child who needs it. Adoption certainly comes with its challenges, but I feel especially prepared to handle life’s challenges, given what I’ve survived already.

          Still, I’m not sure motherhood is for me. I would need to have a partner who wanted to be a parent with me because I know I cannot handle it all on my own (most people can’t). I do worry about my long-term survival so I would not become a parent without backup support in place.

          Although my transplant gave me more energy to take care of children, my immunosuppression regimen makes me particularly wary about doing so. I watch kids eat off the ground, put their fingers in their mouth, and lick their snot. My friends who have children are always getting sick. At this point, I don’t know how I would handle caring for a sick child while being paranoid about my own health. Maybe in time when I have stabilized a bit more and have a partner who wants to take on a lot of the responsibility this will seem easier. But right now my go-to response for the topic is, “maybe I’ll adopt a 15-year old!” …Or at least a kid old enough to know to wash their hands!

          That’s the breakdown of logistics for me. In high school I spent a good chunk of time sobbing about how unfair it is that my disease robbed me of this aspect of womanhood (I was reading a lot of Sylvia Plath at the time). My peers would talk about how they absolutely could not miss out on the experience of birthing their own biological child, and that was tough to listen to. My current peer group makes me more comfortable with the possibility of never being a mother – many of them have already made the decision with their partners to never have children. The biggest change for me was that as I grew up I started thinking more about what I wanted MY life to look like (not what I thought a life should include). Most of my plans don’t involve children, so I’m less attached to the idea.

          I encourage you to discuss your options with your doctor. You should feel, like I do, that you have a choice. Agency is powerful!

          Obviously I have a lot to say on the subject. I hope others will chime in with their thoughts too. I’d love to hear more about what you have been feeling, @kimberlyvansoest. Have you discussed this subject with anyone in your life? What do they say about it?

        • #13554

          Hi Kimberly,
          When I found out that I had hypoxia and wouldn’t be able to have children safely, I immediately became very depressed and felt like I was useless. I went through a really hard time with this and had to talk about it with my therapist often. I went through a period of time thinking my boyfriend wouldn’t want me because I wasn’t able to have kids or that I would be viewed in society differently. It’s difficult because it seems like society in general expects us to be able to have children. My boyfriend and I have been together for almost 6 years and I can’t tell you how many times people have asked me “so when are you guys having babies!?” as if it were that easy!

          I thought about freezing my eggs, but found out that I wasn’t able to do that because of the hormones that are given to me. I also have a genetic condition that caused me to need my tubes and one ovary removed. I am currently waiting on a surgery to remove my final ovary so unfortunately egg retrieval will never happen for me. My option right now is adopting which I am so looking forward to. In the back of my mind though I do think things like, “will my child want a mother that has a limited life expectancy and medical challenges? will I be a good mom? will I be able to take care of a child when I can barely take care of the children I nanny a few hours a day? How could I be a good mom on the days when I am laying in bed?” It is a lot of worry, stress, and sadness when thinking about all of this and you have every right to feel everything you do and think everything you do.

          I would discuss what your options may be with the doctors you are seeing that way you can accept what is told to you and look forward to options that would work for you. It is a grieving process in itself to find out that you can’t have children, carry your own children, etc. You will go through a range of emotions. This is such a sensitive topic and I’m glad you brought it up. You are certainly not alone in your questions and worries and I am here if you ever need to talk about it or private message.

          Even though I question it all the time “why would I want to have a child when I have these conditions” I try to remind myself that anything can happen to anyone. If a child is something that you or I truly want than go for it. Make sure to have the right support in your life to take on the challenges that will come with it, but don’t let your condition hold you back from that dream. I am sure you will make an amazing mother one day, however you decide to do it (if you do decide to do it!) That decision is personal and one that you should never be judged for. You will know what is right.

        • #13576
          Kimberly van Soest


            My thoughts on pregnancy have become messed up the minute I got the diagnosis. Before I got diagnosed, my boyfriend and I were certain about getting pregnant, and we both agreed to get children at a young(er) age. This is because both our parents got children at a young age too and we are very happen to have such young parents and grandparents. (my mom was 23, and my boyfriend’s mom was 25) my boyfriend and I are together for 5 years now, so I know I could pretty much rely on him for anything.

            But that was all before the diagnosis. Even though I still crave this idea of becoming a mom of my own biological child, my boyfriend does not. He admits that, if a pregnancy jeopardizes my health and even my life, he does not want to have children at all. Also, he does not want to become a single parent, so also the idea of uncertainty about my life expectancy plays a big role.

            Therefore, I feel that I am more looking at what is best and not on what I personally desire. However, that is pretty hard. Whenever I mention this to relatives, most of them tell me ‘I understand it is hard’ which, to be honest, is a bit of a sore answer to me.

            Adoption is something my boyfriend and I do not want, so the one option that might still be open is that of a surrogate mom.

            That is something that still present in my mind, but then again, we do not know what the future holds and therefore, it could be the case that my boyfriend does become a single parent after all. He also finds the idea of a surrogate mom very hard, but he is willing to think about it, which is a start.

            It remains a difficult decision to make, and thank god I am only 20 y/o. I still have quite some time to think about it.

          • #13577
            Kimberly van Soest


              I can’t imagine having my ovaries removed. I am so sorry to hear that, I believe that must have been very hard for you to deal with..

              I do believe that I will make the final decision after I know the result of the genetics test. If my PAH is hereditary, I do not think that I will put someone ill on this world, but that is something to think of later.

              Fortunately, I have quite some support around me, which makes it easier to discuss this topic.

              • #13591

                I’m so glad that you have such good support around you. That is half the battle ! I know thinking about all of this is so stresfful. Never feel like it’s too soon to think about. I find that the more knowledge I have, the better it is for me to come up with a plan or think about alternate plans. You always have support here from us too. We truly get it.

            • #15197
              Kathleen Sheffer

                I just came across this article about inherited pulmonary hypertension. It recommends genetic counseling if you have the gene mutation that is the most common cause, present in roughly 75 percent of inherited cases. The gene, bone morphogenetic protein receptor 2 (BMPR2) helps regulate cell growth in the walls of the lungs’ small arteries.

                Have you considered genetic testing? Would you want to have testing done before planning a pregnancy?

              • #30740
                Colleen Steele

                  There is a column on the PH home page about expert care help in pregnancy with PAH. This is a topic members have brought up a number of times. I want to make sure anyone who might benefit from this article will see it.

                  Share your thoughts after reading it.

                  Prostacyclin Therapy, Expert Care Help in Pregnancy with PAH

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