Deciding Whether to Have Children When Chronic Illness Is a Factor

Deciding Whether to Have Children When Chronic Illness Is a Factor

I feel vulnerable writing about this topic, but if this column opens the door for conversation, my discomfort will be worth it.

I recently had a conversation with one of my colleagues about having kids. She is healthy, but I am living with a terminal lung disease called idiopathic pulmonary fibrosis (IPF), which is characterized by progressive scarring of the lung tissue and eventually respiratory failure. The doctors couldn’t be sure it was IPF because of my age, so my diagnosis was delayed. Sadly, I’ve met many other young adults with IPF, so I no longer consider the disease to be rare.

I wish that no one had IPF, but I am grateful that I am able to connect with other patients. The issues we face as young adults with IPF are different than those of older adults — not worse, not better, but different.

For example, we must decide whether to have children. Carrying and birthing a child might be physically impossible for a body with failing lungs and excess pressure on the heart. I can’t be certain, of course, because I haven’t spoken to my physicians about it. However, even if it were possible, the uncertainty of my future and the disease’s poor prognosis make me wonder if it’s selfish to have a child. I would never want to leave a child without a mother or force my partner to be a single father.

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My colleague reminded me of the gruesome and depressing reality that anyone could die tomorrow. People have children all the time, and ultimately, their fate is unknown. I’m just a little more certain than others my age that my life will be cut short.

On the flip side, children can bring us joy, especially if we think of them as part of our legacy. I believe that we all need joy in our lives. It’s up to each of us individually to embrace that joy however we desire. Even for those with perfect health, life is too short to not to spend it doing what we love. If a young adult with a terminal illness dreams of being a mother, shouldn’t it be her choice whether to have children?

I am not that young adult, but I believe that everyone should be happy. Traveling and spending time with my dog, friends, and family currently bring me happiness. The conversation with my colleague did make me stop and think, though, as I am not too far away from having to consider children.

Other young adults with chronic lung conditions, such as cystic fibrosis, have had children. I often wonder how they decided to become a parent, knowing their disease may end their life prematurely. Maybe they didn’t think about it because they’ve always wanted to be a parent.

For me, it hasn’t been that simple. I don’t need to make a decision right now, but I fear that IPF will predict my answer. Even with a transplant, my life will never be simple.

For my fellow patients with IPF: If you traveled back in time to when you were considering children, do you think you would’ve had them, knowing you had IPF? I am curious to hear your thoughts, but please remember there is no right or wrong answer.

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Note: Pulmonary Fibrosis 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 Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!

5 comments

  1. Amy says:

    I was interested in your article because I had IPF. I since have had a transplant and I am doing pretty well. I also have a daughter-in-law (under 30 y/o) with a chronic health condition now and her doctor advised her against having children. It made me so sad to hear this. I would say to listen to your body and watch how your disease is progressing. It may go slow but this is a risk for your life and the baby. Talk to your husband about it. You will need help with care for both of you for the rest of your life. Please consider a lung transplant eventually if you bring a child into the world. They will love you even if you are sick and need that. If you feel you both can do it, go for it!

    • Charlene Marshall says:

      Hi Amy,

      Thank you so much for reading my columns and connecting via the comments. While I wish none of us had this terrible disease, I so appreciate hearing from others on topics I write about that resonate with them. Congratulations on your transplant, I’m so glad to hear you’re doing well, although sorry to hear about your daughter-in-law. Yes, lots to consider when thinking about children with a chronic health condition and a tough topic to both think and talk about! Thanks for your kind words and sharing a bit of your experience, it is greatly appreciated.
      Charlene.

  2. Victoria says:

    My mother in law passed from IPF in 2011 and at the time we had no idea it may be hereditary. In 2017 my husband was diagnosed with advanced IPF. We have two school age children. Even if we could go back I would not change it. My children and myself are stronger for his diagnosis and he has “lived” more than before he was diagnosed. In plants, in a stressed environment, they still try to reproduce- get a few seeds out there. These seeds are resilient. So to are children growing up with the known potential for a loss of parent or disease themselves. If you get a chance read Tolstoy’s short story “What Men Live By”, somethings what we think is horrible is a blessing.

    • Charlene Marshall says:

      Hi Victoria,

      Thank you so much for writing and reading my columns. This is a tough topic to talk about, so I appreciate your reaching out to me regarding it. Sorry to hear about your mother’s passing from IPF, and your husband’s diagnosis. I completely agree with you about the amazing resilience of children – I am privileged to see that every day in my line of work, thank you for the reminder. So glad your husband is choosing to live and make wonderful memories, that is so important! I will check out the story you recommended as well, I always love stories about hidden blessings. Thank you 🙂
      Charlene.

  3. Gisele F Lapointe says:

    Hi, Amy
    Interesting subject you brought up in having children when you suffer with a fatal disease. My daughter had CF diagnosed when she was 19, she went on to lead a pretty normal life, graduated from university, got married at 29, then decided to have a first child, then a second (both through artificial insemination), then a third one through natural means. She contemplated an abortion, but couldn’t bring herself to go through it. This last pregnancy was harder on her and lung transplant was discussed with her doctors, but her health deteriorated pretty fast and so a live donor could not be considered, so a lobe transplant was done (one lobe from her brother, one from her husband). She passed away at 43, 2-1/2 years after her transplant, leaving 10, 6 and 4-year-old children behind.
    I can’t say I approved of her and her husband having children, but I left it up to them, it was their decision, it made them happy, and those children continue to make me happy, so no regret on my part.

    I am 83 years old now and was diagnosed with IPF 5 years ago, doing well.
    Yes, life is full of surprises, good and bad.

    Be well, Amy, my best wishes to you for a long and happy life.

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