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2 carriers for Cystic Fibrosis
Hello, It is my first time posting here. My husband and I found out yesterday that we are both carries for cf. We did some research, and are thinking we will do the CVS procedure.
I am looking for some feedback...on the CVS procedure,
feedback onboth partners be cf carriers,
and having babies with cf.
In advance thanks for sharing your thoughts...
Gen
This discussion has been closed.
Re: 2 carriers for Cystic Fibrosis
Hi there - I can't offer advice on CVS, but I can tell you that we have some family history of CF and were tested before we got pg (only one of us is a carrier). Our position, if we had learned that we were both carriers, was that we would go ahead and have a child and then if the child was a cystic we would do absolutely everything we could to get the best medical care possible. Our family members with CF were wonderful wonderful people, and we can't imagine the world without them, so we hated the thought of choosing not to conceive or terminating a pg if we found out the baby had CF.
Medical treatment for CF is getting so very good, and I know many CF families and physicians who believe that we'll have a cure within the next 10-15 years, which would be well within your child's lifetime (barring unforeseen problems). Also remember that there are varying degrees of severity with CF. I have a friend who has nearly no symptoms. GL - I know this is a tough choice!
I have had CVS with both my pg's. It really wasn't bad!
The hardest thing for us was that when we saw the baby on the U/S for the CVS procedure it became "real" for us and we decided we couldn't terminate regardless. So depending on how you think you might feel about that, just be aware.
Anyway, the actual procedure:
Starts out with a consult with a genetic counselor, going over how everything will work and the specifics of what they are going to test for, and how long it willt ake to get results. You can get early chromosomal results (24-48 hours I think?) for some conditions, I don't know if CF is oen of them.
Then I went in to the exam room and changed into a hosp. gown with no bottoms on. I got up on the table and into the stirrups. The U/S Tech came in adn did the prelim U/S to check that the baby was the right gestation adn in a good position. At that point depending on how many weeks you are they may offer to guess the gender for you.
Then the doc came in and the fun started. They cleaned the crap out of my whole crotch area- multiple betadine (?) wipes, out *and* in, if you know what I mean. It was cold! And I was covered in orange gunk all over my lady bits and inner thighs.
Next the doc started the procedure. The speculum was just like a regular pap exam, and he and the U/S tech talked through the baby's position while he inserted the needle through my cervix. It wasn't really painful, just uncomfortable to have the speculum in for so long.
Then he took the needle out and went and looked at the sample under the microscope to make sure he got enough. My first CVS they had to do a 2nd pass to get more sample. With #2, 1 pass was enough. Then they take out the sepculum, give you a tiny towel to clean up with (wear dark colored pants, lol because there will be staining from the betadine), adn I got dressed.
I had to go get blood work drawn then, so they could verify it was the baby's cells they got, not mine.
Be warned that the whole thing takes a few hours between the counselor, doc, possibly waiting for the doc, bloodwork, etc. I suggest pakcnig a book, a drink and a snack.
Hi - DH and I found that we are both CF carriers after we found out I was pregnant. We decided to do the CVS as well, and found out that DS was just a carrier, like both of us are. He's happy and healthy.
While the pp had an internal CVS (or whatever the official name is), I had an external one (again, NOT scientific terms
: they stuck a long needle into my stomach to get to the uteris.
When I found out I was pregnant a friend gave me Jenny McCarthy's book about pregnancy - it's a short, funny recount of her pregnancy. And in it, I read about her experience with CVS - and how 'no big deal' it was. So, I totally was relaxed and not nervous about the actual procedure. And in fact there was no reason to worry: it was neither scary nor painful for me (or the baby, of course).
I was in the room with a doctor, a nurse and an ultrasound person. The whole thing took maybe 10 minutes. They numbed the area where the needle was going to go in, so I hardly felt anything. I did look away when they brought out the needle, I'm not big on seeing things like that
I felt a little dizzle afterwards, but that was it. So - I wouldn't worry about the CVS itself.
Many hugs, good luck!
I don't know anything about CVS, but I can tell you that both my sister and her husband are carriers of CF. We didn't find out until their son, Logan, was born and after 2 months of not gaining weight, he got tested and diagnosed with CF.
They are making INCREDIBLE advancements in the research for a cure and from everything Logan's doctors are telling us, they see no reason that he won't live a long life.
My sister and brother-in-law give Logan over an hour of treatments everyday, but the joy he has brought our entire family is priceless. We aren't naive and know that there are going to be many hurdles in his future, but we are so very hopeful that a cure will be found soon. He is our precious reminder that we have to live each day to the fullest.
Depending on what you find out and decide, please feel free to send me a PM and I know my sister would be more than happy to share more of her experience.