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Posted By : smileyprincess - 7/8/2011 4:11 PM
Hello I'm 18 years old. I have been with my boyfriend for 3 year and I have cystic fibrosis. I just want to hear from people that have cf and have had children. Although I'm not trying for a child yet, I think it may be awhile for that. But I'm well and positive, and I don't want children so badly when I'm older :) I just want to hear everyone storys ? Much appreciated x

Posted By : Gemsi - 7/9/2011 3:59 PM
Hi,

I'm currently in the process of going through IVF as I can't conceive on my own (though noone can explain why). Toget to the stage of IVF it has been a long process. When I first went when I was 18 I saw a doctor, who was very quick to say noone would ever accept me for IVF because of my CF. They about 2 seconds later admitted he knew nothing about CF, didn't even know what i effected, never mind how it would effect people. I was extremely put off by this doctor and remained in a depression thinking I could never have kids for a few years. In the UK you can't have IVF until you're 23 anyway, but it was massively upsetting. When I got to 22 I started to push doctors to refer me again. My husband doesn't carry any known CF genes so we know that we only have a 1 in 2800 chance that a child we have would have CF. Anyway the referal eventually got sent. My consualtant sent a very nice letter to the assisted conception unit saying he was very happy with my health and lung function and ability to carry a child to term. Everything went into motion. I have had 1 cycle of IVF and it didn't work, but they used a small dose of drugs to help produce the required amount of eggs. In September they're giving me a full dose now they know I am ok and safe with all the extra hormones.

I do have a friend with CF, who has had a gorgeous little boy over a year ago, and another friend with CF who has got pregnant twice and carried 2 healthy babies. It is possible, though you should be aware that it is going to be tough on your body. The better your lungs are the easier pregnancy will be. There is also a risk of having liver, kidney and and increased risk of diabetes during pregnancy, though it is usually reversible once you have given birth.

Hope this helps
Gem
Hey, I'm Gem with CF, age 25 and diagnosed at 2 years old. I'm from the UK and say weird things sometimes. I'm no expert but I've lived through a lot of CF stuff.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type thing.

Posted By : smileyprincess - 7/9/2011 4:15 PM
Thankyou for your reply gem :) I don't understand when you wrote 'My husband doesn't carry any known CF genes so we know that we only have a 1 in 2800 chance that a child we have would have CF' - so your husband had the test and he doesn't carry the gene ? But I thought to have a cf child your partner needs to carry the cf gene so where does the 1 in 2800 come from ?. That is so terrible what you went threw with the doctors and ivf. I also have polocysitc ovaries , so I if I did deside to try for babies when I'm older ivf may be the road I go down. Do you get one session free on the nhs ? Or are u paying for it ? Good luck for september , I hope it all goes well for you and your partner. Also thank you for telling me about the risk of having liver, kidney and and increased risk of diabetes during pregnancy, I didn't no about that. I feel silly asking people about what if this and what if that about having a baby and getting pregnant because I am only 18. But obviously I won't be trying for a very long time, but as you no we have to think ahead :). Are u worried if u do get pregnant how your health will be ?, I know one women who had cf that had a baby and she was very healthy and gave a natural birth to a healthy baby. Are you already thinking about what youl tell the child growing up, x

Posted By : Gemsi - 7/9/2011 5:30 PM
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
Hey, I'm Gem with CF, age 25 and diagnosed at 2 years old. I'm from the UK and say weird things sometimes. I'm no expert but I've lived through a lot of CF stuff.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type thing.

Post Edited (Gemsi) : 7/9/2011 5:33:30 PM (GMT-6)


Posted By : smileyprincess - 7/10/2011 3:50 AM
Thanks so much for your help x iv always known Iv wanted to be a mum. My boyfriend doesn't want a baby now, there may be a time I feel ready and he doesn't. That's something I'm abit scared of. But ill just have to see what happens. There are wonderful videos and books for children on cf that are realy good x I wish they had them when I was little :) thanks for your help x goodluck x

Posted By : Chartreux - 7/15/2011 1:09 PM
I just wanted to give you well wishes in your quest to have babies...
I hope both (Gems X and Smileyprincess)your dreams come true, I
think you have every right to try to be Mother's, you'll both be good at it...
well wishes on this...
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* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Posted By : Gemsi - 7/15/2011 2:28 PM
Awww, Chart thanks.
 
I sure hope I'll make a good mum, if it ever happens.
 
Hugs
Gem xx

Posted By : Wiley Coyote - 2/14/2015 3:36 PM
Hi Smiley. My husband and I wanted a family, neither of us wanted to take a chance with bio kids (I have CF, dyslexia, he is ADD, genetically high probablility of carrying CF gene) especially my husband did not want a pregnancy shortening my life. We have two amazing children, both adopted.

As a strange twist of fate, our older daughter is mildly ADD and the younger is mildly dyslexic and has a bio uncle with CF.......weird, eh? That being said, they both are top notch students and athletes, and just terrific kids all around *proud mamma beam*

And frankly, in hindsight, I'm not sure pregnancy would have been any worse than sleepless nights with a sick baby or worrying over a teenager...............
CF DDf508 w/ CFRD (dignosed 3 months) 43 years old, 2 kiddos

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