I get a lot of questions about having babies with MS and if it still is an option once diagnosed. Being in a long term relationship and diagnosed at 19 it was important for me to do a lot of research into the topic to see how having MS and being on a multitude of medicines for a number of years would affect my chances of having a baby. Now while every person is different and I highly recommend you consult your doctors and neurologists about this topic I have a few hints and tips of what I have learnt along the way.
- Yes you can have kids: MS doesn’t affect your reproduction system as such however there are many treatments for MS that you CANNOT be on while trying to get pregnant or while being pregnant. So this is where the issue and the worry lie. For me it terrifies me to be off medication for long periods of time because you need to be off medication for at least 3 months (so I’ve been advised) before you can even start trying to conceive and then you will obviously be off medication for as long as it takes you to fall pregnant. Although this does seem scary I have got many opinions from different neurologists and all have said it is absolutely possible to make sure you are observed and under great care to ensure your transition off medication to trying to have a baby is well supported.
- Once you do get pregnant: There has been overwhelming research into pregnant women with MS going into full remission while pregnant. It is believed that the shift in levels of hormones while pregnant create a better environment in the body and this is why we feel better however the percentages still stand around 30-40% chance of relapsing once you’ve given birth. My neurologists have advised that this is more likely if you choose to breast feed and stay off medication as your body is going through a lot of stress. If you choose not to breastfeed and go straight back onto your medication the chance of relapsing is much lower. And then here lies another worry and more guilt. You want to give your baby the best possible start at life so do you risk it and breast feed or do you not? My heart would want to but my head would say it makes far more sense for the mother to be fit and able to care for the baby rather than risk a relapse with no guarantee of what will happen. I salute all mothers with whatever decision they have made because we know this shit is NOT EASY – being a mum is probably the most difficult yet rewarding job in the whole entire world!!!
- The stories I’ve heard: I am heavily involved in the MS community and every mother I have spoken to has relapsed after giving birth. Most of them because they chose to breast feed and there was no medication intervention. Also because they had their babies long before we had the sort of medication that we have now and they are so much more advanced at slowing down progression which is great. Personally, my sister relapsed after having both her boys 13 and 11 years ago. With her first boy her labour was so stressful on her body and she ended up having an emergency caesarean, she then went legally blind in one eye. So while being a new mum and dealing with all the stress that comes with that she also lost her eyesight completely in one eye. Thank God our Neurologist and MS nurse are amazing, they treated her and her eyesight came back. With her second child she lost all of her tastebuds – how super weird is that? I mean great way to lose the baby weight but not great when you literally cannot taste a thing and end up losing a whole heap of unhealthy weight while trying to care for two babies. Again, thanks to our doctors her tastes buds came back after methylprednisolone infusions. 13 years on she has 2 happy and healthy boys which gives me so much hope however as we know every person with MS is so different and even though we are sisters and share the same blood, MS has affected us differently and we also respond to the same medications so differently.
- My view and my fears: I think giving birth for anyone is a huge stress on the body – you’re body has quite literally created and birthed a real life human being with fingers, toes and beating heart. It is the absolute most precious thing in the world to be able to do that. However with that said unfortunately there are women like us that their bodies can’t cope with that sort of stress on our bodies and it makes the decision of having children so so so much harder. Last year I found out what it feels like to lose feeling in my leg and it was so damn terrifying for me and my husband. I was so lucky it came back but these are the things you have to risk if you choose to have a family. I desperately want to have a baby but when I think back to the day I lost feeling in my leg I can’t even comprehend the risk, which I then think is so selfish and then your brain starts spiralling into a whole lot of self-guilt and it is so hard to come back from it. When I think about being a mum like every woman, I want to be the best damn mum I can. I don’t want to get so fatigued I can’t peel my body from my bed to feed it, I don’t want to relapse and end up not being able to properly care for my own baby. Right now the decision seems to be too difficult but mostly because I have been relapsing for quite some time now and the stress of losing feeling in my arm and my leg are still very real. So in true missanonyMS form we have decided to park this decision until after my new treatment and not think or worry about it until I have the ability to control it. I am going to focus on what I CAN do now not what I CAN’T. I am going to get myself as healthy as possible and pray super hard that Ocrelizumab gets me back on track and when it does I can’t wait to re-visit this topic. Although scary, I know many women with MS who have had kids and with a few bumps in the road they have come out the other end. I urge anyone who is struggling with this decision to talk to their doctors, their nurses and the MS community in their areas because it will make you feel so much better about your decision. I also strongly believe your story is written for you and whatever is meant to happen for you, it absolutely will all in good time. I used to think I would already be a mum and I would have babies before I was 30 but as we know nothing ever goes to plan but don’t be discouraged when it doesn’t – it just means it isn’t what is meant to be for you now but keep hoping and believing and when the time is right you will look back and know everything happened in its time for good reason!!!
Lots of love always…
Miss anonyMS aka Rania xo