We often talk here about childlessness that comes because one’s partner is unwilling, but what if that partner wants children but has health conditions that make pregnancy impossible or dangerous for mother and baby? What if you find out after you’re married?
Fans of the movie “Steel Magnolias” will remember when Shelby, the young woman played by Julia Roberts, defies her mother and her doctors and gets pregnant despite her Type 1 diabetes. When the child is a few years old, Shelby dies of kidney failure. The pregnancy was too much strain on her body. It’s melodramatic, not totally realistic, and the movie comes from an era when childless marriages were much less common, but it does shine a light on that horrible decision some people are forced to make. Do I want a baby enough to risk my own health and the baby’s?
On the Nov. 22 episode of The Full Stop podcast, three guests told their stories of health problems that forced them to give up on motherhood. Charlie Bishop has MRKH (Mayer Rokitansky Kuster Hauser) Syndrome, in which females are born with absent or underdeveloped reproductive parts. Pregnancy is not possible for the one in 5,000 women with this condition. Bishop is planning for a childless life, which includes getting married next year, travel, writing, and directing an organization called MRKH Connect, which sponsors research and offers support. She can be found across social media via @mrkhconnect.
For Palo Barker, a condition called myasthenia gravis has prevented her from even considering pregnancy. Myasthenia gravis is a chronic autoimmune, neuromuscular disease that causes weakness in the skeletal muscles. Some days, Barker says, it takes all her powers just to breathe. She is in and out of the ICU and takes high dose steroids that could harm a fetus. She is active in a group called Chronic Survivors Childless Warriors and myasthenia gravis groups in the UK. She also has a private group for Asian childless women, open by invitation only.
Steph Penny suffers from lupus, an autoimmune condition which makes the risk of miscarriage or congenital deformities too great. She has written about her own situation and that of others who are childless not by choice in her book Surviving Childlessness: Faith and Furbabies. She has also carried her message into her work as a singer-songwriter with songs like “Angel at my Keyboard”, which you can listen to at stephpenny.com.au.
While Bishop and Barker didn’t really have much of a choice, Penny says she faced what she calls a “forced choice.” When told there was a 50 percent change she would miscarry or the baby would be born with severe deformities, she and her husband decided the risk was too great. It seemed like the only rational choice.
For these women and others like them, their reasons for not having children are not visible from the outside. People may assume they don’t want kids when that is far from the truth. They face the same clueless questions and dire predictions about a lonely old age as the rest of us, but what choice do they really have?
Although the podcast guests were all women, men also deal with illness, injury, or congenital problems that make pregnancy risky. They too may face a “forced choice.”
These conditions may not show up until after one is grown and in a relationship, wanting to have children. How do you deal with this? If you’re the spouse, do you give up on having children? Do you leave and seek someone else? Or do you accept this loss together as a couple and support each other through the difficulties of the illness?
What do you think? Do you or someone you love have a chronic condition that would make pregnancy impossible or inadvisable? How do you live with that? If it was possible but risky, would you take the chance?
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Childless by Marriage 
A woman in my community did everything she could to get pregnant. Because I’m a business owner, this woman visited my work to ask for donations for a benefit to help infertile women. She vowed that she was starting a program that would annually give back to all women like her. At this point, the bulk of her story (see below) was public and used to garner donations. I disagreed with her choice and politely declined.
This woman struggled. Multiple miscarriages led to warnings that a healthy child would not likely be possible due to a rare chromosome issue. I don’t know the full extent of their medical journey, but long story short – she gave birth to a beautiful boy. A boy who is mentally sound but has a unique and painful physical disorder that will profoundly set him apart for the rest of his life.
She later went on to have another child in perfect health – not sure how she managed that, but her life is largely consumed with the expensive and challenging health issues of her first child.
I occasionally see this child in town and I think of how lucky I am to not have to deal with something so difficult. I don’t agree with abortion. Had she been unaware and gotten pregnant, I’d have great respect for her to still give birth and to be his proper mother.
But knowing that she was warned and still proceeded, at substantial cost, to get pregnant makes me feel different things.
Obviously she is consumed with her child’s health issues, but this woman never did throw another benefit to help “women like her.”
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Wow, Anon. That’s sad. I think most of us would rather not have a child born with severe problems, but others would welcome any kind of child and be glad for the chance to care for them. It’s one of those tough choices. Miracles, like the healthy second child, do happen. A woman I know was diagnosed with lupus, the same illness Steph Penny has, in her teens and had two healthy children before her third pregnancy ended in miscarriage. It’s a risk. Some of us will say no. Some will give it a try.
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