No, not again! Our family is beautifully complete, but these were the decisions we were facing 7 years ago. The desire to have another child is no small thing. As I have said previously, we chose to go down the route of IVF with pre implantation genetic diagnosis (PGD) to try to conceive. Going through IVF was very humbling, and I am eternally grateful for my own fertility, I know many others who were not so lucky and how this has affected and continues to affect their lives. We waited over two years more for funding and treatment for PGD after deciding to try. I don't go into this post without fully relating to that need and desire for a child....
Partly due to the cross infections issues with CF (cannot mix without the risk of passing on infections) and partly because it's just the world we live in now, there is a large and wonderfully active CF community online. This community of people with CF and parents of kids with CF, has been a life saver to me at times when no one else could fully understand what I was going through. I have come to know many who I now count as friends... and just as many who are no longer with us.
But within this great online community there is one debate which comes up quite regularly, and this is of having more children when you knowingly carry the faulty CF gene. Like most, we didn't know we were carriers when we had our firstborn, but we do now.
The comments which always sadden me are the ones from numerous parents who say 'WE could cope with another child with CF'
- but it's not about US is it? It's about THAT CHILD, who would no doubt rather not be born with CF. It's their life, we just get to share those first years with them, love and guide them into being (hopefully) decent human beans.
The other is 'I love my child with CF, so why would I not want another?'.
- We all love our children! That is never in doubt. Just because I went out of my way to NOT have another child with CF, doesn't mean I love the one I have any less (rather, I wanted to protect him from potential cross infections risks should his new brother or sister have CF too).
Another is 'I think the cure is just round the corner, so I'm going to risk it and have another child'.
- God, I hope you're right, and whilst we are massively positive about our boys future, we are still mindful that they thought the cure was round the corner in 1989 when they discovered the faulty gene. Besides, he's had enough painful procedures in his short life already which I wouldn't wish on any child. Hopefully treatments will get better, but he will already have endured too much.
Finally is the 'I like the idea of PGD, but think IVF will be too much of a roller coaster for me'.
- I get this, I've done it twice. My ovaries went from the size of plums to grapefruits and I was hospitalised for 10 days in agony, had to measure my wee for weeks and inject daily into my belly for 13 months as a result of weird side effects to IVF.... BUT, a cycle is 6 weeks. It's not forever. CF is. How can people compare a few weeks of their own lives, to a lifetime with CF? I know the odds are against you, but is it not worth a shot? Maybe just try for funding and go from there?
Only 5% of CF parents try PGD....this amazes me. We were beating down their door to try. For us it was absolutely the right decision and we are proof that it can work.
A hugely emotive subject, and no right answers. I just hope that other parents might try and think less about what they want, and more about the child that they might be bringing into the world. And how that affects the other members of the family too.
Truly no offence intended. To all those friends facing these hard decisions - good luck. Have a great day x
