Posted 7/9/2011 5:30 PM (GMT -6)
Hiya,
My husband has been tested and doesn't have any known genes. Cf comes with different mutations but they can only currently test for a handfull of them. There is always a tiny percentage that he may carry a mutation that they can't currently test for. I think it's why when people say they only have 1 CF carrier gene but somehow have CF....I think their other gene must be one of the ones that can't be tested for.
On the NHS I get 2 sessions of IVF free. It's all postcode lottery. I am going to a hospital about 27miles away for the IVF as they have helped people with CF from my clinic before. That hospital only allows 1 cycle of IVf with funding in their area, however because my local hospital you can have 2 cycles free, then they have applied for funding through that hospital. It's all confusing.
I don't think it's silly with CF wanting to get pregnant early. You have to find the balance between being ready and being in top conidition. My consultants interest before becoming a consultant was CF and pregnancy, he helped write the booklets you can get. He told me that for a CF girl with a good lung function it can go one of 2 ways. You can either lose health permenantly during pregnancy or it can actually increase after pregnancy. Unfortunately there is no way of knowing in advance which it is going to be. It's a big decision to make. I have wanted a baby since my sister was born when I was 9. She was in my room with me from day 1. I think I knew from that point that I wanted to be a mum, though wasn't sure it was possible. When I was 17 and met my husband, I realised I was allergic to condoms and couldn't have anysort of pill. My hubby was 22 when we met, and already knowing he wanted kids himself. Within the year it seemed logical to try for a baby, before my health deteriorated like some of my friends with CF had.
I worry a lot about care of my child if I get ill. I have 2 nephews and every now and then when I have an active infection I find them really difficult to look after. When I'm well though I can chase them round and really make them happy. I love hearing them giggle, and it fills me with energy and strength usually. I know that if they were mine full-time I wouldn't need to put in as much energy as I do when I see my nephews though. I know I can provide a child with so much love and just want that chance. I dont have great parents myself, they've never dealt with my CF my dad left when I was 4 as he couldn't handle it. I know I would never do that too my own kids, they will be the most improtant people in the world too me, and I'll make sure they know that.
I do sometimes stop and wonder if it's the right thing, but I just know it is. I walk with a crutch and I'm alread having plenty of practice explainging why I need it to my 4 year old nephew (who's going through the "but why?" stage. I've been the one to explain my CF to my sister over the years, in little bits and bobs as she's needed the information, even last month at age 16, she was still asking some questions, they're getting a bit more about my life xpectancy now, and how I am compared too others with CF (think she's been reading things online). Also had a friend recently who had been looking up about CF so he didn't have too ask me, he came to me with a lot of hard questions. I'm prepared for all the questions, definitely won't say it's ever going to be easy though.
Really don't feel silly about asking questions, if you don't ask you'll never know. CF is complicated enough without not being able to ask how it might effect your future.
I hope when the time is right for you, that you can make a desicion based on the pros and cons of getting pregnant and will know that is the right decision for you.
Gem x