Michelle’s Story – Coping Without a Child

For as long as I could remember I wanted to be a mother and have my own children.  When I was a child and all my friends would dig their dolls out of the wardrobe to play and then put them back in after the game. Not me, I played real life with my dolly. I played as if it was my own baby and put them to bed every night. I never realised until I reached about 20 that it might not be an option for me. I went through life dealing with my CF but no one ever mentioned to me that we could have fertility issues or just not be well enough to carry a baby.

It wasn’t until I met Neil, my partner, 7 years ago and realised we would be together forever that I really started thinking about children. I joined the ‘CF Mothers’ Facebook group and got a wealth of information about motherhood and pregnancy in CF. Then Neil and I started to discuss having a baby and looking into getting him tested to make sure he was not a carrier. From the information I got from the group, I started to realise how blissfully ignorant I had been about motherhood and CF. I realised my health was not at the best level recommended for pregnancy but neither was it near enough to the worst to be a definite no. Others had done successfully done it with a lung function the same as mine and had been fine. So I approached my team about the issue.

They said that it wasn’t a definite ‘no’ and that they thought I would cope, but that we should think about it and start getting the ball rolling with gene testing when we were ready. All of a sudden it felt like a reality and I could start to imagine my life with a baby. I held off for a while as wanted to focus on getting myself to my best and putting on some weight; I didn’t want to rush things. I am glad we didn’t. 6 months or so later my health started to decline for no reason. I just wasn’t picking up as much after IV treatments and was needing them more often. Over a year or so things stabilised but then they dropped again and so it went on. My lung function could still be ok after IV’s but I was advised against it at this point due to all the medication and IV’s that I needed for stability which couldn’t be taken in pregnancy. I simply would not have been able to cope without them.

I was devastated but determined to get back to how I was and prove them wrong. Unfortunately that did not happen. Things are worse now; my FEV1 is 40% at best and into the 30% range at worse. I have had a couple of years to process it and come to terms with the fact that I won’t be having a baby. As heart-breaking as it can be sometimes, I know it’s for the best. I couldn’t have coped without lots of the medication I take on a day to day basis. Someone mentioned to me about surrogacy as an option but it isn’t for me. It isn’t the surrogacy part itself that I don’t want – I think that is amazing. But with the way my health is, I am so exhausted all the time that I know I couldn’t cope looking after a baby/young child. We got a puppy instead and he’s my baby for now!

It is hard when my friends/family have babies and I feel jealous and angry sometimes that it can’t be me but then that disappears again afterwards. I know it’s for the best and am thankful I waited to start trying or I would have fallen poorly in the middle of a pregnancy which could have been bad for me. I didn’t really speak to anyone about my feelings for a long time as all my friends were having their own babies and I didn’t want to put a downer on that. Even now people I do not know well enough to share these things with say “when are you two going to have a baby? It’s your turn!” and it’s hard to shrug and laugh it off when they really have no idea.

I am lucky to have a great partner who understands and is ok with this part of our future. I know there are options for me in the future with all these new medications or if I have a transplant one day. So I hold onto that and just keep myself as well as possible in case that day ever comes.


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