RE: Re: jenicnca1010

[Guest guest]

Hi there. I just wanted to share a little with you because my son was also

2 months early, was diagnosed in utero with a perforated bowel due to

meconium blockage. Spent 3 months in the NICU and is now 3 and a half. I

just wanted to say hang in there! is VERY healthy. Has had no

problems since his bowel surgery and has been very healthy, aside from

pseudomonas back in November, which we think we have irradicated for now.

Have throat culture next week. Just thought you might like to hear this,

since my son is a little older, and went through the same experience.

We said the same thing, no more children with cf, and never again risk the

NICU experience. Well, nature had other lans, and LONG story short, we took

precautions, with a specialist, to avoid CF, and it failed. We are due to

have another baby boy with CF in 5 weeks. You just never know what the

future holds, even when you say " never again " . It has been rough, but this

baby has made it a few days past 's 33 week delivery, and shows no signs

yet of blockage, so hopefully we will make it to 39 weeks.

Melinda - son 3 wcf and sister 2 wcf

Re: having more children??

I have a 1 yr old who was born 2.5 months premature due to the CF related

meconium ileus

blockage. He was in the NICU for 10 weeks and jsut had a g-tube placed

due to poor weight

gain. We went through hell and my son went through hell and back. He was

in pain, alone in the

NICU at night, couldn't eat for weeks, has had so many tests, etc. I will

NOT go through that

again. I personally think it is irresponsible to have more CF children.

They have such a hard

road ahead of them that it seems cruel to me to knowingly give birth to a

CF baby. I know there

are many who will disagree.

When my husband and I want more children (at least 3 years away), we will

try naturally and

then terminate at 14 weeks if we learn the DNA test comes up positive for

CF. If that doesn't

produce a CF free baby after 1 try, we will do IVF with preimplantation

genetic diagnosis and

only implant eggs that are CF free. Pricey but better than going through

2 terminations. Or we

could adopt. Years away so we have plenty of time to think about it.

Hope that helps.

> Hello~

> I am brand new to this list. My son is 7 1/2 months old. I only

> have a quick moment to post and I have a question. Since Isaac was

> born, we knew we wanted more children. Most of the posts I have read

> here, if the parents have more than one child, their youngest has

> CF. Maybe this is because once they found out they both carry the

> gene, they didn't want to risk it by having another child. I was

> just wondering about everyone's opinion on this matter. Did you

> choose not to have more children due to this? If you do have more

> children, was this a hard decision for you? Please explain. Thank

> you very much. I hope to write more soon.

> Lori

> mother of Isaac/7 months old