Mums the word - Or is it?

Written by Yvette Keitley

Deciding whether and when to have children is a huge decision, and harder to make if you're battling ill-health. In the first of a three part series on becoming a parent, Yvette Keitley looks at issues members have addressed in making their decision.

Parenting, even with health on your side, can be exhausting, not least because your sleep gets so disrupted. As an "ME Mum" I can relate to many of the concerns potential parents may have when thinking about having a child.

For me making the decision wasn't the hard part - I knew I wanted a baby regardless of my illness - it was more the unanswered questions surrounding our decision. As a friend said, when I told her I was expecting "How on earth will you cope?"

Practical issues

Money matters

A major concern which affects all couples is finance. Whether or not you can manage on one wage is often a key factor in making the decision.

In some cases couples with ME are already used to surviving on one income, so there wouldn't be a great deal of change. However, nappies and formula milk don't come cheap, making a decent hole in any pay packet.

Many new mothers struggle to cope with giving up work, being at home all day and financially dependant on their partner. However, with women with ME this is nothing new as the illness may have meant you've been unable to work or get out much for some time.

Family Support

Most parents with ME say that having support from family members and friends is vital. If I didn't have my parents and partners' parents close by I doubt I would have survived. People doing chores like ironing or cleaning leaves you some energy to look after the baby. Practical and emotional support from family becomes even more important if you are faced with being a single parent at any point.

Wanted: Hands on Partner

To cope with the pressures of illness and parenthood, your relationship with your partner has to be super strong.

Robert cares for his wife Marie and their son Ryan is 17 months. He agrees that the relationship between him and his wife has to be tough to withstand the pressures of being parents.

'Sometimes it's hard when I get in from work and Marie is exhausted, Ryan's been running round all day, and I have to start work again by cooking tea. Marie doesn't take me for granted, but I do a lot of things for them both. From my point of view, its like doing two lots of work in one day. It does put pressure on our relationship, but I wouldn't change it for the world.'

Positives to having a baby

Personally, not one day has gone by since my son Alex was born when he's not made me laugh. He's 22 months old now, and if I think that each day he's been around I've laughed, I know it must be doing me some good. A lot of parents with ME say that their child brings a meaning and importance to their life that they didn't have before, especially if they'd been to ill to maintain a career.

Shannon, who's daughter Bethany is six months old, couldn't agree more: "Some days I really do feel awful, especially if Bethany has been awake all night, but I know that even though I feel rough, there is one little person who loves me regardless. It makes me feel needed, a feeling I lost through being ill."

Concerns and Fears

Can M.E. be passed on?

One of the major concerns many people with M.E. have is whether the illness can be passed on to their baby. The simple answer is 'no', according to Dr Charles Shepherd, author of Living With ME, and father of three healthy children conceived since he's been ill.

However he does recommend postponing conception until your condition has stabilised if your in the early stages of the illness and if time is on your side. This is especially relevant if you are continuing to experience ongoing 'infective' type symptoms such as sore throats, swollen glands and a temperature.

While there is little research in this area, some doctors do make the point that the condition is slightly more common in families. This may be because there is a genetic influence in how we respond to most infections, though findings are far from clear-cut.

Will pregnancy make me worse?

It's encouraging to note that many women with ME find that their illness improves during pregnancy, possibly due to the immune system suppression that occurs to prevent the foetus being rejected.

However this isn't always the case, and I'll be taking a closer look at managing pregnancy in the next issue.

Relapsing is another fear expressed by many people. Back-up strategies would need to be in place if the worse happened and you couldn't take care of the baby. Cleaners, nanny's or child minders could all be considered, but again, as long as family and friends are available to help you, then most problems can be overcome with advance planning.

Problems conceiving

Depending on how badly you want a baby, one point to consider is the prospect of IVF. If you couldn't conceive, would you be able to cope with the drugs and the procedures?

Ondine successfully had IVF and now has Tatyana, aged 15 months. She says, 'The drugs did affect my M.E., which flared up after each of the five IVF cycles I had to undergo. The clinics emphasise that you'll feel dreadful on the drugs, but each person has to work out what will minimise the effects for them. IVF is a huge strain so you need to do everything you can to make your life easy in other respects if trying it.'

Childlessness

The physical limitations ME poses means that some couples decide they wouldn't be able to cope with bringing up a child, while others live away from family, so no support would be available. This can be devastating if having a baby was important to you, and its important to talk through any feelings of grief and anger so they don't consume you.

By choosing not to have a child, couples naturally have more freedom, money and quality time together. However becoming an auntie, uncle or godparent can be wonderful as the enjoyment of the child can be on your terms - but they can be given back too!

Margaret and her husband Alan decided that as both of them suffer from ME, bring a child into the world would be unfair. 'Neither of us is a full strength to look after a baby', Margaret explains. 'We wouldn't be able to give him or her all the care we'd like, as both of us are housebound.

'Taking care of our two cats, while no substitute of course, brings us both pleasure and is something we can enjoy together.'

Making the decision

Ultimately, no couple can be told whether to have a child or not. You need to decided what is best for you and your family - and to be sure that you definitely 100% want to be a parent, because its going to be pretty hard work. In my experience and from talking to other mums with ME, the key to success is support from family and friends.

Having ME is awful, but having a child is wonderful, and often the good out ways the bad. I can't pretend that life is easy with Alex, but not once have I regretted having him, and without him, I would be missing out on a completely amazing, albeit exhausting, world.

Next in the series: Coping with pregnancy

Taken with permission from the Action for ME's November 2003 edition of InterAction.