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JessiRaye
member
Cystic Fibrosis??
JessiRaye
member
Hi ladies,
Does anyone here have a child with CF? My best friend is due on Christmas Eve with her first, a little girl! Baby Lyla Grace will have cystic fibrosis.
I will possibly be keeping her child when she returns to work....Most likely part time. I am just curious if there is anyone here with a child with CF. I have thought about getting her to join the bump. I know she's looking for several different outlets/support systems.
TIA!
This discussion has been closed.
Re: Cystic Fibrosis??
Hi there! Actually, I used to live in that area:) I worked in Vienna so not too far from Falls Church. But I am actually in Roanoke now. And my BF is currently in NC but planning to return to VA after the baby is born to be closer to her family.
Thanks for responding though! I am surprised that no one else has responded. There has got to be a few CF moms on the board I would imagine???
I've been following this blog: https://cfhusband.blogspot.com/
This family has an amazing story and seem like they really are involved with other families who have been touched by CF. Maybe they would be able to help your friend?? Best of luck
I don't think anyone on this board has a child with CF. While 1 in 25 Caucasians is a carrier of a CF mutation (and there are over 1000 mutations) both parents must be carriers to have an affected child. Most people (if they are well informed) will do carrier testing if they are thinking about getting pregnant then do IVF with PGD if it turns out they are both carriers.
Having a child with CF can be prevented. I think that the most of us here have kids with syndromes/diseases that couldn't be anticipated or prevented.
Thanks! True, it can be prevented. I guess I was just thinking about my circle of friends though...none of us chose to have the carrier testing. Anyway, I hope I didn't offend....Just trying to see if there was anyone on this board she could relate to before I suggested it.
She actually is looking into groups that meet regularly so that's good.
Thanks again ladies!!!!
Thank you! I will pass this blog along:)
Wow, amajane you are seriously misinformed that it can be prevented and your response is offensive that someone would be smart enough to weed out the bad genes to prevent it.
Jessiraye- My ds's CF clinic is really good with helping find local support, resources and education. There are many issues/problems that go with CF and not everyone has all of them and there is a wide spectrum of severity. I would urge your friend to join a CF specific online group versus the bump for a support group. IMO it's more helpful to talk to people that are dealing with the same medical problems.
OK, I understand where AmaJane is coming from (my DD's diagnosis was definitely not anticipated) but I want to say that simply being able to do CF carrier testing doesn't mean that someone whose child has CF is any less deserving of support and love, and it doesn't mean that everyone gets tested before they get pregnant. To the contrary, I had 2 different care providers when I was pregnant, and both offered me CF testing after I was already pregnant (I had already had it, see below, but it's evidence that routine pre-conception CF testing isn't really in place yet). Not to mention, IVF with PGD is really expensive and not always covered by insurance. It's probably just a quirk that there aren't any parents of kids with CF on this board.
DH had two biological sisters who both had CF and both passed away in their early twenties. DH and I have both been tested - he is a carrier, I am not. Because his sisters died quite a while ago, I don't know much about the CF community now, but we do attend an annual CF gala and there are a lot of adults living with CF now and living very full and wonderful lives. Good luck to your friend!!
I think thats a bit uncalled for. Both my LO's have an inherited condition and we could have done IVF + PGD... if we had a spare 20K lying around. Easy to say it when you aren't the one faced with either rolling the dice or not having kids.
Actually, I am not misinformed nor do I think my response was uncalled for. Having a child with CF is preventable. I know this because I am a fertility nurse and have patients who have done PGD with IVF to prevent having a child with CF as well as many other genetic syndromes that are autosomal dominant and recessive.
And while PGD is expensive (and not 100% fullproof) there are other options such as using a egg donor, sperm donor or embryo adoption- all that I have seen utilized to avoid having a child with a possibly fatal or debilitating medical condition.
My point in my response is that for many genetic diseases- there is routine carrier testing. It is preventable. In fact, my facility routinely screens and offers genetic testing for all of our patients seeking fertility treatment. It would be great if all OBs did this routinely for their patients- but that will take time and pressure on insurance companies to cover all prenatal testing.
And suzymarie- Before you judge me, I am one of those people "faced with either rolling the dice or not having kids". My DD has an unknown genetic syndrome- most likely a mutation that is autosomal recessive. PGD is not an option for me but if it was I would do it in a heartbeat rather than risk having another affected child. The cost of PGD with IVF is a drop in the bucket compared with the costs of having a sick child. In my case, I won't roll the dice; I'm choosing not to have anymore biological children.
You are misinformed. As you know carrier testing is not 100%. You know this because carrier testing only tests for the most common mutations. My sister had NO way of knowing as the mutation she evidently carries is not picked up by the standard carrier screen. Also, as we know it is not practical to genotype everyone. Why would someone without a past history for a genetic disorder, who tests negative on a carrier screen, be interested in other fertility methods? I am 100% offended at your suggestion that this can be prevented. Also, at your insinuation that everyone would want to prevent a child with CF. Yes, it is true we have a lot of individual who's life span is cut short, but we have A LOT of healthy, vibrant, and active adults. We have teachers, accountants, medical students, engineers, pastors, radio personalities, mothers, fathers, etc... It's not that I disagree with everything you said..I do agree with you on a lot of stuff. It's just that this is something I feel very strongly about as I am a proud CF nurse and family member.
To PP please feel free to contact me if you have any questions.
To OP, my sister had CF and when we were growing up we regularly attended various events and support groups. Contact the CF foundation in your area and I'm sure you'll find something.
https://www.cff.org/aboutCFFoundation/Locations/FindAChapter/
While not 100%, there are options for screening that are 99+%.
See sig. DH and I have no interest in passing this disease along. CF is a life-shortening, quality-of-life reducing DISEASE. No matter how many awesome things he can still do, or be or whatever... the fact remains that it's not normal, and it blows. He's on IV antibiotics now and has been for the last week and a half, and at least another week to go - last time it was 7 weeks. They're expensive (and so are all his other meds). He's out of work (at least he can work) on disability.
We ran into a few people with the "Why prevent?" attitude at the last CF conference we attended - we were speechless. (Later, it was more along the "Are they $%$%ing nuts?" lines). Both my DH and his brother have CF. Both would do anything to avoid passing it along. Yeah, it took us a few years to get into a $ situation to do PGD, but not doing it was not an option - not even if we could get PG the old-fashioned way.
To the OP - the best resource will be the CF center. Make sure she goes to an accredited center (list on cff.org). They have a full service staff, including a social worker who would be able to give excellent recommendations. There may be a parents group associated with the clinic.
You certainly don't need to tell me that CF is life shortening and quality reducing. All I was trying illustrate was that the disease is very expansive and there are very healthy and very sick people. I am slowly watching my 10yo nephew die from this illness. We are simply hoping to see a high school graduation from him. He is on 24 medications daily and at the age of 10 already has to deal with a feeding tube and mediport. We were told this summer that there is nothing else they can do that they have already thrown their "big guns" at him. I think people should make an educated decision and understand their risks. I do think the why prevent attitude is silly. It kills me to see families now and days, especially with the technology, with multiple children with this disease. The fact of the matter is that carrier testing beyond the standard screen is not feasible for many families. I don't know what the situation is for the original poster, but who would think to do extra testing if there is NO genetic background. This was the only point I was trying to make..for families that have NO background for the disease. In your situation I can certainly see doing extra testing and I applaud you for being proactive. All of our patients have undergone testing, with the exception of one, before reproducing. I guess it was how the one poster came across..it was a bit harsh for me, but then again this is the internet and I shouldn't expect for people to be sensitive. Well, I am sorry if this is longer than intended...I just didn't want you to think I was one of those why prevent people. I hope you had a wonderful Thanksgiving and that the antibiotics work for your husband and he feels better soon.
My nephew has CF and cff.org is an amazing resource. I am not naive to the severity of the disease, but there is such PROMISING and HOPEFUL research and developments being made right now that doctors are truly optimistic that a cure will be found soon. I know there are a few other sites that my sister frequents to talk to other parents so once I talk to her, I will definitely pass along the information.
In the cff.org website, there is a section for the Great Strides walk and hopefully there is one in your area. We did our first walk about a month after my nephew was diagnosed and it was so inspiring and comforting to see other families dealing with the same thing. There were 50+ year old adults walking that are living with the disease and it really helped our family stay hopeful.
Our thoughts and prayers are with Lyla Grace and her entire family!
I have CF. This has been an excellent support/resource for me, and there are many parents of children with CF on the board as well. I also highly recommend that she find the best CF clinic within driving distance- the doctors you see can make such a huge impact on your quality of life. Please feel free to page me on the NC Bump board if you have any questions- I don't stop by this board very often. Best of luck to her and her little girl!
https://www.cysticfibrosis.com/forums/
Amajane: I have a DS with CF and we didn't find out until the PKU test results after his birth. Even if we did find out before his birth - nothing would have changed for us. Don't just assume, please.
My son has CF and he is amazing!!! The Drs have been very wonderful and supportive. He's five months and doing well on the meds. We just started the chest/breathing therapy and he's not liking it but trying to establish a routine for it in the future. He's growing and gaining weight like a champ!
The Cytic Fibrosis Foundation is a wonderful site that can point her to great information.
The best thing she can do for him is breastfeed if possible and read the recent CF book by Orenstein about CF and the Family. It is very helpful and full of great stuff.