Planning a Family with a Chronic Illness

Family planning is a momentous decision for any person – but how do you make it when you have a chronic illness that is genetic?

I’ve never been an overly maternal woman, but recently, after three years of being married, I have started to think seriously about having a baby. Upon deciding that they are ready to start a family, many couples may have a discussion around finances, their support system, whether or not the mother will take a year out but resume work afterwards, and what their hospital of choice is. For my husband and I, we are going to have to think very carefully, and consult a specialist, before proceeding to try for a baby.

This is because I have a genetic condition called hypermobile Ehlers-Danlos Syndrome, or hEDS. Running on my mother’s side of the family, this condition makes my joints unstable and prone to full or partial dislocations, and my soft tissues surrounding the joints prone to injury, as a result of faulty collagen DNA. 

Collagen is the substance that holds our joints together, and it makes up our blood vessels too. The laxity in my collagen causes all sorts of weird symptoms and co-existing health issues – everything from recurring haemorrhoids to seizures, and poor circulation to panic attacks. Each person with hEDS experiences a myriad of comorbid medical issues as a result of this condition, and to varying degrees.

There are two things that are making me really pause before beginning to try and start a family. Firstly, there’s the risk that my condition could permanently worsen – many women I have personally spoken to had hEDS to a mild-to-moderate degree similar to me before having children, and pregnancy and childbirth have put so much stress on their bodies that their symptoms hurricaned, and they now have daily dislocations and require the use of a wheelchair. 

Other medical conditions that arose after childbirth included prolapses of the uterus, gastroparesis (the inability for the stomach to empty itself), and chronic fatigue. 

These are all serious conditions that could make it difficult for me to take care of a baby and would require a solid support system from my husband and his family, and my own family. It would also most likely render me unable to go back to a full-time job.

Secondly, there’s the chance that I pass on hEDS to my child, with no guarantee of how severely they would get it. Do I want to take that risk? And if we are both unwell, who will take care of us? Would my husband be able to work full time and be our carer?

Doctors have no way of knowing whether pregnancy and childbirth will exacerbate my condition – or whether or not my child will inherit it. If I am fortunate enough to have a midwife and obstetrician that are familiar with hEDS in pregnancy I may get the support I need during pregnancy and childbirth, but this is down to pure luck.

This may all sound like doom and gloom, but as someone with an invisible disability, these are all considerations that myself, and other women with chronic illnesses and disabilities have to take into account – and it causes a lot of anxiety.

There are some women with hEDS who have had the complete opposite experience – no worsening of symptoms, and actual increased energy and less pain. The laxity in their tissues and joints actually resulted in a quicker childbirth. My mother tells me to focus on these positive stories, and not on worst case scenarios.

In addition to contending with questions over my health, I also have to contend with certain views around motherhood in my community. As a Muslim woman there is actually nothing in Islam that says a woman must have children, nor does it ever say that the primary function of a woman is motherhood. This idea has come about in our cultural communities, where newly married women are put under pressure by older family members to start a family as soon as possible. Every time I go to a family function the aunties (female elders) scan my belly and ask me “no baby?”

When I recently told my mother and mother-in-law about my concerns, and that I would like to adopt a child instead, I was told to put my faith in God, and that they would support me, and that adoption should be a last resort. As thankful as I am for their positivity and willingness to support me, why is adoption a last resort? Perhaps it may be the better option – giving a child a loving and supporting home, while also being able to take care of my physical health. Their concern is that the maternal bond a woman has with her biological child may not be there.

Mothers who have chronic illnesses and disabilities also face prejudice and criticism from people at the other end of the spectrum, and that may be another thing I might contend with should I have a child, and that is the idea some people have that women with chronic illnesses or disabilities should not have children. 

This takes away a woman’s agency – a chronically ill or disabled woman knows her body and her condition best, and her choice to start a family is completely her own, with no prerequisite for anyone’s approval. She will know whether or not having a child is the right decision for her.

Whatever decision I come to over starting a family, I do it knowing I will have thoroughly researched it, alongside the support of my husband, whether it is trying for a biological child, or adopting and welcoming a child into our home.