Navigating Parenthood with EDS: Genetic Risk, Ethical Considerations, and IVF
Discussing complex personal choices when it comes to pregnancy
In case you missed it - I’m expecting! And I am eager to share this journey with all of you. I recently asked what topics you would like me to discuss when it comes to pregnancy and Ehlers-Danlos syndrome (EDS) or chronic illness in general. One of the most requested topics so far was conversations around having biological children with a known risk of passing down a genetic condition. While this is a very personal decision, there are a lot of factors to consider that may guide you to the best choice for your situation.
Disclaimer/Trigger Warning: This blog will discuss ethical considerations surrounding pregnancy, IVF, and genetics. It may touch on sensitive topics, including pregnancy, infertility, and reproductive choices.
Biological Children and Risk of Passing Down A Disease
When deciding to have a biological child, one of the most significant concerns for parents with chronic illnesses like Ehlers-Danlos Syndrome (EDS) is the potential risk of passing down the condition. EDS, particularly hypermobile EDS (hEDS), is known to be inherited, often following an autosomal dominant inheritance pattern. This means that a parent with hEDS has a 50% chance of passing the condition to their child. Other dominant chronic illnesses with genetic components can similarly carry risks, while recessive conditions would require both parents to be affected or carriers.
In the context of EDS, there are a lot of questions those who wish to be parents might want to ask themselves. They could include the following:
Are there life-threatening risks with the type of EDS my child could have (such as vascular EDS, or vEDS)?
Do I have the resources (financial, medical, emotional) to take care of a child who could have EDS and potentially other comorbidities?
Have I accepted that, even if we choose not to have a biological child, screen embryos, or adopt, accidents, illnesses, or disabilities could still affect our child?
Do I believe that a child with my same condition would have a quality of life that I think is “good”? (This is a complex and deeply personal question, as everyone’s experience with EDS is unique.)
Have I considered the spectrum of EDS, knowing that my child, if affected, could experience better, worse, or simply different symptoms than I do?
Given my own health, regardless of whether we choose to have a biological child or not, should I consider surrogacy as an option?
There are a lot of important considerations, and genetic counselors are healthcare providers who are well-equipped to guide you in these discussions.
Is IVF an Option?
For some families, in vitro fertilization (IVF) combined with preimplantation genetic testing (PGT) can offer a way to select embryos without known disease-causing mutations. While IVF is a complex and expensive process, it provides parents the opportunity to reduce the likelihood of passing on specific genetic conditions, though it is not always feasible or accessible to everyone.
Ethically, IVF can begin to move into a “grey” area when it comes to selecting embryos. While most wouldn’t argue with selecting a healthy embryo versus one that has a recessive genetic terminal illness at a young age, the potential for “choosing” other traits—medical or otherwise—is a debated topic in the IVF space. What becomes difficult is knowing when things cross the boundary from medical necessity to personal preference.
One example is deafness or hearing loss. Many individuals within the Deaf community view deafness not as a disability but as an identity and culture. Choosing to select an embryo without this trait, or conversely, selecting for it, raises complex ethical questions. Is it a medical condition to be avoided, or should it be embraced? How we define disability vs simply the world failing to be accessible and inclusive is an important conversation. This is just one example of how IVF can blur the lines between medical decisions and personal values, making reproductive choices more ethically complex.
In the EDS space, IVF and PGT are frequently discussed. When it comes to hypermobile EDS, IVF and selecting embryos without EDS would not be possible without definitive, clinically diagnostic genetic markers, and is currently not an option. However, in other types of EDS, IVF and PGT is occurring. In one case study, a woman with vEDS used IVF and surrogacy to have children unaffected by the condition. After several IVF cycles, including natural IVF (without hormone stimulation due to the risks it posed to her health), she successfully had children via a surrogate.
Emotional Considerations
Deciding whether to have a biological child when facing the risk of passing on a chronic illness involves deep emotional reflection, beyond just ethical considerations. There may be a constant, internal dialogue about what it means to knowingly pass on a condition that may impact your child’s quality of life. Feelings of fear, guilt and hope can be overwhelming. This is a very personal decision - you are not wrong for choosing to take those “risks”, and you are not wrong for choosing other options. In my own situation, I have found peace in knowing that my experiences personally and professionally, my background and knowledge, and the resources I have access to, make me feel confident that regardless of my future child’s health - I will be able to be the best mom I can be. This is a very personal journey, and there are no easy answers.
Conversations with Genetic Counselors
Genetic counseling should be a part of your decision process. Pre-conception genetic counseling can include conversations with counselors help you and/or your partner understand the specific risks involved, not only for EDS but also for other conditions through carrier screening. Oftentimes, people will not know if they have a history of a recessive disease in their family. Carrier screening can determine if you carry any mutations for other conditions, and if your partner does too. Based on family history, personal concerns, and genetic testing results, a prenatal genetic counselor can guide you to the best decisions for you and your family.
As I embark on my own journey of pregnancy, I’m grateful for the opportunity to share these reflections with you, and I encourage you to seek out the support you need, whether it be from genetic counselors, medical professionals, or loved ones.
I’ve also started compiling a list of items I’ve used throughout pregnancy so far that are available on Amazon, and will continue to add to this list!
I’m not in a position where I’m thinking about children and don’t know if I will be, but this is such a thoughtfully written post. I learned a lot, and I think you named a lot of important considerations for this process. Congrats again!
With us we didn’t know about EDS until a few years ago. I was diagnosed first at 41, then both of my kids were diagnosed with EDS. As we did further tests for Mast cell I found out that I had Hereditary Alpha Tryptasemia. We then had the kids tested and only my son inherited it. We also found out about the same time that he is colorblind also from me being a carrier of the gene. If I would have known prior to having children about EDS I don’t think it would have changed the outcome. I’m just glad that they were diagnosed young so that we can prevent damage from happening later in life unlike my poor body.