A whopping big can of worms

with 22 comments

Yesterday a friend on Twitter re-tweeted a post from the UK Telegraph about ‘the world’s smallest mum’ having had her third child and not ruling out having a fourth.

Curious about just how you get the moniker ‘world’s smallest mum’ I checked it out and have not been able to shake the story out of my head since.

Stacey Herald is 36 and has a rare genetic condition called Osteogenisis Imperfecta, which according to the article stunts her growth and causes underdeveloped lungs and brittle bones.  

From my very cursory research this condition is what we commonly hear referred to as brittle bone disease.

According to the Osteogenisis Imperfecta Foundation people with this condition:

  • In addition to fractures people with OI often have muscle weakness, hearing loss, fatigue, joint laxity, curved bones, scoliosis, blue sclerae, dentinogenesis imperfecta (brittle teeth), and short stature. Restrictive pulmonary disease occurs in more severely affected people.
  • OI is caused by an error called a mutation on a gene that affects the body’s production of the collagen found in bones, and other tissues. It is not caused by too little calcium or poor nutrition.
  • OI is variable with 8 different types described in medical literature.
  • The types range in severity from a lethal form to a milder form with few visible symptoms.
  • The specific medical problems a person will encounter will depend on the degree of severity.
  • A person with mild OI may experience a few fractures while those with the severe forms may have hundreds in a lifetime.
It goes on to say that the characteristics of the disease vary from person to person – which is to be expected in any genetic condition as we all bring our own genetic material to the party. The key health issues commonly seen in people with OI include:
  • Short stature
  • Weak tissues, fragile skin, muscle weakness, and loose joints
  • Bleeding, easy bruising, frequent nosebleeds and in a small number of people heavy bleeding from injuries
  • Hearing loss may begin in childhood and affects approximately 50% of adults
  • Breathing problems, higher incidence of asthma plus risk for other lung problems
  • Curvature of the spine
The website points out that childhood and adolescence are particularly difficult for people with OI but that most go on to lead “productive and successful lives”. 
So, with all that said if you had this condition, would you a) try to have a baby when doctors advised you against it and b) there was the chance your child would inherit the condition? 
My answer to a) would be probably as I know how strong the desire to have your own child can be. 
But my answer to b) is absolutely not. If it was possible to undergo IVF procedures which ensured the embryo did not carry the mutation then I may barrel on down that ethical minefield of genetic selection. But would I have a baby knowing it was pretty darn likely they would inherit what is clearly a painful and debilitating (there are different types of OI with varying levels of severity) condition? Absolutely not. 
Hear that kebang? That was the lid popping off and those darn worms heading in every different direction.
Of Ms Herald’s three children, two have inherited OI. Her second child does not have the condition and at age two is already taller than her mother. Ms Herald says in the article: “I can’t physically stop Makya if she’s upset,” said Mrs Herald. “She’s too big for me now, so Wil has to take care of that.”
Here’s hoping Makya only gets upset when her dad is home from work. 
It is so not my place to stand in judgement on this family but man is it wreaking havoc with my brain. 
Who am I to say she should not have had children. I mean, plenty would stand and look at my history of depression and anxiety and point an accusatory finger that I should not have had children for fear of passing on any genetic predisposition to these conditions. 
I mean, where do you draw the line? 
If say, a permit to procreate came into affect which meant we all had too undergo genetic testing in order to be allowed to have a child then I suspect very few of us would ever become parents. 
Oscar’s genetic disorder is a rare, freakish result of chromosome four getting carried away way back when he was just a moosh of cells. No hereditary predisposition. No dodgy chromosome from mum or dad. Just ‘one of those things’. 
Had I undergone genetic testing with that pregnancy and discovered something was wrong would I have terminated? Yes. Why? At the time, at the tender age of 24 it probably would have been because I didn’t think I would be able to handle it. At the wise age of 37 and now far more experienced in the world that is having a disability it would have been because I did not want my child to have to suffer all that comes with having a dodgy chromosome. When I see how hard the world is for Oscar …
Now look – many will argue that the idea of not wanting our kids to suffer is universal and undergoing trials and tribulations, tragedies and all the rest are what make us stronger and better people. Absolutely. 
But would you knowingly inflict it on your child? And rather than those hurts and hardships come from life experience have it stem from part of the very fibre of their being? For me the answer is a resounding no. 
I keep looking at the photo of this family and there are two children there who are going to endure endless painful procedures and myriad health issues for the rest of their lives. Then there is another child who by the miracle that is genetics dodged the bullet. I can barely imagine the ‘issues’ that child may have down the track. And for what? Because this couple wanted a family? 
It just doesn’t feel right. 
Your thoughts?