Any parents of children with CF who chose to have another child?

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Hope for the future
New Member

Date Joined Oct 2008
Total Posts : 2
   Posted Yesterday 8:39 AM (GMT -6)   
Hello I am a new member and want to hear from mother/fathers who chose to have more children after having a child diagnosised to CF.  We have taken 5 years to see what life is like with children with CF. When our daughter was born in 2001 and our son in 2003 we did not find out about CF until his newborn screening, she also was tested and positive.  Currently there are days where we say is it really right?  Are children are both on the mildly affected and this years annual their lungs were better than ever. My son has only been hospitalized for bowel obstruction once, and this spring was a bit under for his BMI, we are trial other things for his weight gain now, however like the dr say, he is one active wild boy, and genetics plays a factor is sizes.  But we have wanted 3 children, and we are at the point where we or I looked into the PGD procedure to study the genes then implant them. My husband has gotten me to the point where he is against it as I am now. We all know when you concieve there are 100+ things that can affects someone other defects, MR, you name it, stillbirth, why would we choose to eliminate CF when we dont know whatelse is possible.  He doesnt want to do this he feels its saying we wouldnt have our babies. They are the world to us and we have been very involved, actually goning on our 6th annual great strides walk I chair in our small town, I have started a support group through our hospital to support other parents newly diagnosised etc.  Are children are doing wonderfully they are very confident with who they are what CF is and that each person is special and so on and so forth.  I am looking to speak to others who had more children after having a child diagnosised with CF, what were your experiences.  We are very confident in our decision and thankful for our family and know there is always somone out there worse we do not look at it as a sad poor us thing, but more like we are blessed with our 2 miracles and "everthing happens for a reason" even though sometimes you wonder when you will know why!  But we will make it ok, continue to strive each day for keeping our kids healthy, and fighting for the Cure!

Forum Moderator

Date Joined Feb 2007
Total Posts : 1050
   Posted Today 6:51 AM (GMT -6)   
Hi there,

I know I'm not a parent, but I just thought I had something to add.

Having a baby is, and should be 100% your decision as parents.

I will say just consider every possible outcome, what if this child has a worser case of CF from the get go. Also, a lot of people don't consider the fact that a few people with CF, don't get ill until they're around 16/17, then all of a sudden their health will plummet, without rhyme or reason.

It's not selfish of you for wanting another child though, it's human nature to want kids, to see them grow up into their own person. At the end of the day, noone knows exactly all the genetic faults that they are carrying. If poeple worried about what genes they were passing on etc. The human population of the earth would be zero.

I'm currently in a situation myself where someone with CF on one of the forums I go on, has passed away. Leaving behind an 8 month old baby. That's the thing that's making me stop and think. Not whether or not I will pass on the CF gene. Because even at my worse, there's always a part of me that knows inside it's not always going to be this bad, there will be a rainbow, I just have to look for it. Noone can know 100% if they have the gene, due to there been thousands of mutations, and they can only test for a handful. To be on the safe side, noone should get pregnant. But that goes against all our intincts as humans/animals.

I've met some very amazing people with CF, out of everyone I've met, only one that I know of has been put in prison. I think the CF gene definately adds an exra sparkle into a person. I'm sure the gene for strength is located right next door to the CF gene, and they are neighbours that get on well together.
I have one friend who was given a year to live, a year on she was still batteling. 4 pnuemothorax's and a haemothorax in the space of 2 weeks. Her family were given the talk, that they could do no more, it was now upto her. While all this was happening, she was on TV a lot, to try and raise awareness for organ donation. Started an organisation. She then did something truely amazing, and was pushed round a racecourse with hundreds of others and about 50 of her angels, then, on full oxygen, she got out and walked the last 500 meters with this great huge cheesy grin on her face. The physios had said she'd only be able to manage 100 meters.

She did lots more awareness raising on TV. God only knows how! Then 6 months later, she got a double lung transplant. But the lungs were out of the body for more than 5 hours, normally meaning they would be unusable. They went ahead and fitted them anyway, it was her only chance of survival really. It meant she started out with a frozen diaphram. Had to be taught how to walk again, after been chair bound/sedated for so long. 2 months after her op, she was running down a beach. Then she got a job, like she'd wanted. While ill she'd done a lot of studying at uni etc. Then she managed to get her organisation turned into a charity and won an award for it.

There are a lot of hard and bad bits to CF. But, it definately wakes you up, and helps you appreciate life more.

One not-so-wise women (my gran actually) once said to me, that all people born with disabilities, should be killed at birth, so they don't put as much strain on the economy. It's so easy for her to say that which is disturbing, but you know. In my 22 years of life, I have done a lot more with my life and helped far more people, than she as ever done in her 61 years. I personally think someone should kill her, as she sits on her bum all day eating, then throwing what she's eaten back up (she's had a gastric bipass free on the NHS, because she couldn't stick to diets.)

You know, this is your decision, and nobody, not one person should make you feel bad for it.
Sorry this has turned into quite a long winded rambly post.

Hope you and your children stay healthy.
Gem x

Moderator of the Cystic Fibrosis Forums
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Post Edited (Darkies Gem) : 10/27/2008 5:56:49 AM (GMT-6)

Loving Grandma
New Member

Date Joined Jun 2005
Total Posts : 3
   Posted 11/3/2008 1:06 PM (GMT -6)   
When my granddaughter was diagnosed with CF at 17 months, my daughter was already preg with her second child. Thank god that he turned out to be only a carrier. I don't think she would have had a second child if her first was diagnosed before she became preg the second time. She has decided not to have any more children because she doesn't want to bring anohter child into life that would have to deal with the treatments.

New Member

Date Joined Jan 2009
Total Posts : 2
   Posted 1/24/2009 4:17 PM (GMT -6)   
I am new to this site and came across it while searching for any information from parents with a CF child. While I pregnant with my now 2 year old daughter, my husband and I both found that we were CF carriers (both Delta F508). We had a CVS and found that our daughter is a carrier. She is a healthy, vibrant child and the love of our lives. My husband and I desperately wanted more children. We met with genetic counselors and found out all of our options, but we wanted to conceive our baby naturally (much to many others disbelief). We firmly believe that God has a plan for us and that any child born to us is a miracle. We decided TTC in April of 2008. We got pregnant on the first try only to lose the baby at 6 weeks. We waited and prayed and then tried again in Sept. 2008 and once again we were pregnant on the the first try. We are currently 18 weeks pregnant and awaiting the result of our amnio (which was one of the scariest moments of our lives). We are anxious and hopeful that the baby will either be a carrier or a non-carrier, but we want to know so that we can devise the best plan and learn as much as we can about CF before our baby is born. Since I am 37, our doctors also warned us about my increased risk of DS. We are in no means planning to terminate our pregnancy, I was just wondering if there are any parents out there who are in a similar situation and had any words of advice for living day to day life with a child with CF. Thanks for any advice!

Regular Member

Date Joined Mar 2007
Total Posts : 35
   Posted 1/24/2009 11:20 PM (GMT -6)   
i don't get it. if you've already got two great kids with CF, why not have another? you're not really saving anyone but yourselves by trying to have a third, more "perfect" child. we CFers may be sick, but that doesn't make us any less worthy of life.
we are all lying in the gutter, but some of us are looking at the stars.

New Member

Date Joined Mar 2009
Total Posts : 11
   Posted 3/4/2009 12:33 AM (GMT -6)   
Hello! I'm the eldest of four in my family and the only child that has CF. I take it you both are carriers? If so, then there is a 25% chance that each of your children will have CF.

New Member

Date Joined Apr 2009
Total Posts : 4
   Posted 4/21/2009 4:11 PM (GMT -6)   
hi my name is kelly i have a daughter with cf she is now 8 so we decided to have another child she is 4 weeks old now and also has cf. we planed the baby and i wouldent change it for the world. it is hard at times but no harder than looking after 1 child with cf. its easer with your next child because you no wot to do

New Member

Date Joined Nov 2012
Total Posts : 1
   Posted 11/20/2012 8:27 PM (GMT -6)   
hi my name is leah i have a 7 year old cf child and 2 younger non cf children... i wouldnt change a thing... even if i would have know that trenton would have cf before he was born i still would have had him.. he is an angel and my saving grace!!! blush
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