Starting a family is a decision that should never be taken lightly and this was certainly true when my husband and I took the plunge. We had married young but always planned to wait for ten years before starting a family, just as his own parents had done. This would afford us the opportunity to work and travel first and put me at the age of thirty when we had our first baby.
Unfortunately, when I was 28, I was diagnosed with multiple sclerosis. Due to the highly unpredictable nature of the MS monster (as I call it), nobody can accurately forecast how an individual will be affected by it in the future and so planning a family is a task fraught with uncertainty. Along with all the usual worries about this new chapter in our lives, we bore the additional burden of knowing about the MS and yet having no idea about what that meant for the future. Would my symptoms get worse? Would I pass on the risk of developing the disease to our baby? How would we cope with all the implications that we couldn't even envisage?
For those diagnosed after having children, the decision never needed to be made, but for people like me who were diagnosed before starting a family, there can be a fair amount of anxiety deciding whether or not to have children at all. I cannot advise other People with MS (PwMS) one way or another, but I can share my experience in the hope that it may help them with their own decision.
Strangely, I don't remember asking about having a baby, but I do remember asking about getting a puppy as I was planning to buy one for my husband for his 30th birthday. A tired-looking woman answered “Do yourself a favour and don't get a dog. I have four kids and a couple of dogs, and while I love my animals, they just mean even more extra work for me.” I know that the lady meant well, but I'm really glad we didn't follow her advice at the time. Our Rhodesian Ridgeback 'Scout' was with us for nine glorious years and provided immense happiness in our lives.
I do remember telling my neurologist about our plan to have a baby when I was thirty and asking for his advice. He told us that as there was no cure and no way to predict my particular future with the disease, the best thing we could do was to continue on as we had already planned but immediately start one of the available treatments and surround ourselves with as much support as possible. Then when we were ready to start trying for a baby, suspend the treatment and see how it all went. For the next 18 months, my symptoms were quite mild with just a few relapses here and there so we followed the advice and started trying for a baby.
About four to five months after giving birth, women with MS often experience a relapse and I was no exception. I had a substantial relapse which resulted in difficulty walking and the loss of sight in one eye. Fortunately I regained the function in that eye but soon lost it in the other. Luckily, the optic neuritis resolved itself, however, as our precious son naturally gained his ability to walk, I slowly lost mine. I continued to accumulate disability to the point that now, almost 13 years after being diagnosed, I am confined to a wheelchair.
The shadow of the MS monster still permeates our lives and may yet affect other decisions about our future but it's a constant challenge to plan around such a shifty beast. Statistics can at least offer a little guidance. Women are about twice as likely as men to develop MS, so that favours our son, but if one of your parents has MS, you have a one to three percent chance of developing the disease — as compared with the risk in the general population, which is just a tenth of one percent.
There is also a geographic element to the occurrence of MS: it is far more common in areas such as Europe, southern Canada, northern United States, New Zealand and southeastern Australia but researchers are yet to discover why these are high-risk areas and the low-risk areas of the world are closer to the equator. They do know that if a child moves from a high-risk area to a low-risk area, or vice versa, he or she tends to acquire the risk level associated with his or her new home area. But if the move occurs after puberty, the young adult usually retains the risk level associated with his or her first home. Along with all the usual worries and questions about decisions that may affect your child's future, we encounter some additional ones and are left asking ourselves some unusual questions; should we actually consider moving closer to the equator before Kai hits puberty?
You might wonder whether or not we would change our decision to have a baby at all if we could go back in time and my answer is unequivocally 'no'. Our hearts simply overflow with the intense love for our son and I wouldn't exchange that nor the experience of being a mum for anything in the world. The MS monster is a skilled and wily thief that has already robbed me and my husband of so much; I am immeasurably glad that we didn't let it steal our chance to become parents too.