I wanted to talk a bit more about MODY being an inheritable disease. Most people get MODY is something that runs through my family, but don’t consider the implications of this when I would want to start a family of my own.
Just to be clear, I am not there yet! I am not planning on getting pregnant anytime soon. But I do think it’s something I need to put some thought into. I would like to share those thoughts with you :)
Further, it looks like all women my age are suddenly getting pregnant around me. Big C anything to do with that???
MODY is a highly inheritable disease. It’s so called ‘autosomal dominant’. This means if a parent has MODY, he or she has a 50% chance of passing it on to its offspring. This knowledge weighs heavy on me. I do not wish diabetes on anyone, and certainly not my children! I know how hard it can be; how my relationship with food and exercise has changed; how I have to think about it almost 24/7.
Some people, especially health care professionals, consider MODY as a mild form of diabetes, nothing too bad. It can be managed with just a pill. Not so much. I know –for me- it’s progressive and made me feel like a failure every time my HbA1c came back ‘worse’. I have seen the look in the doctor’s eyes when I asked for insulin. He was disappointed. I was not a ‘good’ MODY, ‘cause I couldn’t manage it with just a pill.
All this I don’t want to pass onto my children. I want them to eat whatever they want, whenever they want. Or at least don’t have to think about it from a medical point of view.
But what are the options???
The good news is the defective gene in MODY is known. So in theory I have two options to prevent my children having MODY;
1) Let nature do its job and have a NIPT test (Non-invase prenatal test).This is a regular screening during pregnancy and they look for chromosomal defects. I my case, they could look specifically for the MODY gene. Than I would have to make a heartbreaking decision.
2) Make sure I have a healthy child through IVF. The harvested eggs would be screened for MODY and only the ‘healthy ones’ would be fertilized.
In my opinion, option one is not an option at all. I don’t want to go through these weeks of both happiness and fear. Happy to be pregnant, but in constant fear I would possibly have to end it all.
The second option is ‘easier’ on the mind, I think, although this will be a journey as well. Bey bey romance. Let’s make a baby in the lab.
I know I have to be grateful this option exists in the first place. Second, I am very lucky to live in a country with good health insurance and this would all be covered almost completely.
Still, I feel a bit sad about it. This is just another hurdle on life’s way for us.
I know many people with MODY just choose to have children and hope for the best. I respect that choice. Whether it’s out of a religious point of view, or maybe IVF is just too expensive where you live, or just because you feel MODY is something you and your child can live with.
For me though, it’s a non-negotiable. So here we are, looking at the journey ahead. I know what has to be done, but I don’t like any part of it.
I am sorry if this is a bit of a heavy post to start the week. But like I've said before, I want this to be a realistic view about my life with MODY. Heavy subjects and hard decisions are just part of that.
Thanks for reading, I hope you have a more light and pleasant week ahead :)