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.