[adoptingourfirst]

We were just presented with a birthmom who is going to be induced on Monday morning. She is currently incarcerated. She is perfectly healthy and has had a healthy pregnancy. This is her 3rd baby. Her first is living with her dad and step-mom and her 2nd was born last July and she placed her for adoption with a family. They have turned down this baby because it is just too soon for another. The baby girl they have is absolutely adorable. Perfectly healthy and so is her other daughter. Our only reservation is that she tests positive for being a carrier of Cystic Fibrosis. Now, I do not know very much about CF so please, if you do, please fill me in. From what I can tell, the only time you have to be really concerned is if the bio father is also a carrier. Then you have a greater chance of actually having the disease. The problem for us, is that they have yet to find him. From what I've read it is higher in Caucasians (which she is) and less in Mexicans (which he is). Would you be concerned?

[Sohmakun]

Actually, you are in a fortunate situation because the baby is a girl and girls rarely have full blown Cystic Fibrosis. In nearly all Cystic Fibrosis cases the victims are males because of their X Y chromosome. Normally you will not be able to tell whether a child have Cystic Fibrosis until they are about 18-24 months. One of the most common symptoms is salty tasting skin. If she were to become your daughter then when the time comes to talk about her sexuality you need to tell her to consider having a partner that does not carry the trait. If she wants to have children ask her to consider adoption or using egg donation to create a family. If she or her partner insist on having biological children then she may consider a procedure called family balancing. What happens is the doctor will have her to create several embryos but only the female embryos will be implanted in your daughter's uterus. The procedure has a 90% success rate for girls.

For more information visit this site:

1. Cystic Fibrosis Foundation - ABOUT CYSTIC FIBROSIS
2. Cystic fibrosis - Wikipedia, the free encyclopedia

For a support group come here*:
1. Cystic Fibrosis Support Group

In order to join the support group you must have a yahoo e-mail account

[RavenSong]

Originally Posted by Sohmakun

Actually, you are in a fortunate situation because the baby is a girl and girls rarely have full blown Cystic Fibrosis. In nearly all Cystic Fibrosis cases the victims are males because of their X Y chromosome.

I'm not quite sure where you got your information, but it's not correct. Cystic fibrosis is not a sex-linked disease. It is an autosomal recessive genetic disease. The gene that causes cystic fibrosis is found on Chromosome 7, an autosomal chromosome (i.e., "non-sex-linked"). It is not found on the X or Y chromosomes.

Girls are diagnosed with CF with the same frequency as boys. Girls with CF also tend to die earlier than boys, although researchers are still unsure why this happens.

[Sohmakun]

oops, I think I'm confusing it with homophillia, sorry!

[RavenSong]

Originally Posted by Sohmakun

oops, I think I'm confusing it with homophillia, sorry!

LOL, when I read your post, the thought that came to mind was "this sounds like she's talking about hemophilia"! You are absolutely correct about hemophilia being a sex-linked genetic disease. It's carried on the X Chromosome.

[Sohmakun]

Yeah, I though so too because I was tempted to send in an application for a Russian boy that had full blown homophillia.
But alas, I changed my mind when I found out about the Russian fees I would have to pay (about 40,00 dollars!)

[RavenSong]

Even if both parents are carriers of the cystic fibrosis gene, their child will only have a 1 in 4 chance of developing the disease. You probably don't have much to worry about here, especially since the father is of Hispanic heritage. Only 1 in 46 Hispanics even carry the CF gene. Conversely, about 1 in 25 people of European descent are CF carriers.

[Jo Ellen]

adoptingourfirst... I have read your post about your concern of CF. My nephew and niece are 12 and 8 and both have the disease. As far as a child having the disease both the mother and the father have to be carriers for a child to have it. There are different aspects of the illness. My nephew has more of the digestive problems and was diagnosed at 2 months old. He wasnt thriving as he should have been at the time so they did a number of tests and found out he has CF and has been on the enzymes since he was 2 months old. My niece has more of the problems with her lungs so therefore wasnt diagnosed until she was 6 months old. She too takes the enzymes for her stomach but has more issues with her lungs. She has had pollups removed from her nose and will need that surgery again as they are growing back now. I am only sharing what I know about it based on what I know from my brother and sister in law as they deal with the illness with their children on a daily basis. The good news is the life expectancy is much older than it use to be. A CF patient can now live into their 30s where back in the 50's children with it didnt live long enough to attend school. I know from living with it in our family it can be a scary thing to think about. There is a young woman by the name of Lo Dietrich from Tulsa OK who has written a book with her parents on her fight with CF. The name of the book is The Spirit of Lo and can be found online by typing in the name of the book. I have read the book and it gives day to day insight of what a CF patient lives with daily. I hope this helps you in your search for more information.

[Jo Ellen]

adopting.... if you want to PM me I would be happy to share more with you about what I know about CF.

[happygmom]

As a supporter of the CF Foundation (looking at my "65 Roses" calendar as I type this), I encourage you not to be discouraged by possible CF. Treatment has improved in recent years.

The figure skater, Scott Hamilton, has CF. My grandson's baby sitter has CF. She works part-time, is a college student, and almost has her solo pilot license. Yes, she does have more than the average number of medical issues, but she leads a full and complete life.

If you do not know about "65 Roses" and CF, please read the story in this link.

Cystic Fibrosis Foundation - About 65 Roses

With best wishes,

Happy G'Ma

[Whirled_Peas]

I cared for many patients in their 20s and 30s who had CF. Most got lung transplants. Most are dead now. Treatments are getting better so who knows what the future holds in store.

I knew one family with 4 children, 3 had CF.

I miss my patients with CF. Most were truly wonderful people and I grieve their passing.

Only you can decide what is best for you and your family. Most of these children require a lot of care--frequent hospitalizations, IV antibiotics, chest percussion. Yet they are truly wonderful people, just like all other kids. They are as deserving of a loving home as healthy kids. The question is, are you willing to give them the care and love they deserve? If not, pass on this baby.

[Kat-L]

Originally Posted by RavenSong

I'm not quite sure where you got your information, but it's not correct. Cystic fibrosis is not a sex-linked disease. It is an autosomal recessive genetic disease. The gene that causes cystic fibrosis is found on Chromosome 7, an autosomal chromosome (i.e., "non-sex-linked"). It is not found on the X or Y chromosomes.

Girls are diagnosed with CF with the same frequency as boys. Girls with CF also tend to die earlier than boys, although researchers are still unsure why this happens.

That's true. CF runs in my brother-in-law's family. He had two young cousins (sisters/girls) who died at 14 & 15 .

[OakShannon]

CF is a heartbreaking disease - but it really sounds like the odds are very small that this baby would have the disease. IF the bio father is a carrier - and the odds of that are just over 2% according to a previous poster - THEN she has a 25% chance of having the illness. If he's not a carrier - the odds of her having the illness are nil.

Good luck with your decision.

[mumofone]

I haven't read all the responses, so forgive me if I am repeating something.

CF has a 25% chance of being inherited if both parents are carriers. My oldest son has a friend who has it, and so does her brother. The children are 10 and 17, and both are quite healthy.

Good luck with your decision.

[adoptingourfirst]

Thanks everyone! We have decided to have faith and go for it! We know that no matter what - everything will be ok. I truly appreciate all of the information you all have provided! I have spent quite a bit of time in the last two days researching CF and all of your information helped!

I'll let you know what happens!