Making the Painful Decision Not to Have Children Because of My Illnesses

I’m a young adult, 22, and I have made the decision to not have my own children. I hide this information from people as best I can because of the backlash but every so often someone asks me, “Are you excited about having children in the future?” Not if I plan on having children – that is just assumed. But if I’m excited. I manage to talk around the subject 90 percent of the time but if it is one of my bad days that I deal with frequently, the tears start streaming down my face. This typically does not go unnoticed.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I hate hiding what I deal with because it is a part of me. I am this strong person today because of my health conditions, so when people ask why I’m crying, I don’t hide the truth. I tell them that because of my many conditions, I am not medically advised to have children. The responses vary, but most are similar to, “If it is meant to be, it will happen. Don’t give up hope.”

Hope is an extremely funny thing. I do hope to one day have my own children, but at what cost? I don’t hope for my children to live with the pain of Ehlers-Danlos. They have a 50/50 shot at this. I don’t hope for my newborn child to have open heart surgery to prevent sudden cardiac arrest. Again, they have a 50/50 shot at this.

This was not a decision that was made lightly in the least. I spent five years going to countless therapy appointments with numerous injuries and surgeries to get my diagnosis. Then I spent the next year having open heart surgery as a senior in high school and recovering from that, and dealing with the consequences of having a major surgery with a connective tissue disorder. I can’t fathom bringing a child into this world because even though I am selfish and would love my children to have my own DNA, along with that DNA can come the DNA mutations.

I can’t fathom the thought of having a child carry both my major conditions, along with any secondary conditions that tag along. A 25 percent chance of them having both is just too high for me. A 25 percent chance of them having neither is just too low.

Adoption is such a beautiful thing. Children don’t need to have our DNA to be our own. I plan on turning something negative in my life into something beautiful. There is a child out there who will one day need me. They may be healthy, they may not be. But I will be able to give that child my all.