If you had a child with a terminal illness that was genetic, would you have another?

Question

Let me preface this question. I have a cousin who's child has Cystic Fibrosis. CF is a genetic disorder in that both parents must be carriers in order for the child to develop the disease.

At this time, there is no cure for CF. My cousin does well considering the beast this disease is. She is 7, has been in and out of hospitals, and has even had to have her right lung re-inflated after it collapsed last year.

She will not have children, and will likely not see her 30's. Though the life expectancy has gotten higher for the CF children, it is still a terminal illness. And a very harsh, painful one.

They want to have another. They considered adoption, but are likely going to try to have another of their own.

I am torn here. I want desperately for her & her husband to be happy. But I also don't want to see another child born with a life sentence.

I know that seems harsh, but if you could see the pain that my little cousin sometimes has to endure you'd understand.

Answer 1

My husband has Cystic Fibrosis that was diagnosed when he was 2. He's 37 now. We've been married 12 years and have been very happy. His parents were told he would die by age 12.

If both parents are positive for the CF gene, they only have a 25% chance of having another child with CF. There is a 25% chance the child will have no CF gene, and a 50% chance that the child will carry only one gene.

There are so many advances lately in the treatment of CF. My husband is now waiting for a double lung transplant and has just recently, within the past year gotten really sick. Each case is different.

Ultimately, the decision is not yours to make or even advise unless you have been asked. Without proper knowledge of CF and what it's about and how it affects your life, it is hard to make that decision.

I believe that all life has value in it's own right. If they decide to have another child and he/she does have CF, there's a reason for it. All life, sick or healthy, can be a joy depending on how you deal with it.

Answer 2

i'm sorry to hear about the pain that this dilemma is causing you. firstly, research and prognosis for CF has come a long way in recent years. secondly, it is now legal for parents carrying genetic disorders to have genetic screening of embryos to ensure that the resulting child is not a sufferer of the disease. this involves a womans eggs being harvested and then fertilised by her husbands sperm out of the womb. each embryo is then tested for genetic disease and healthy embryos are placed back into the womans uterus. as you can imagine this also carries with it many moral and personal issues as you may have the view that i childs life starts at conception and it would be wrong to destroy an effected embryo. if this was something to consider then a gp will refer you to a fertility hospital where you will get all the emotional and physical support you need.
i wish you and your family all the best

Answer 3

I'm sorry for the pain your family has experienced.
I understand your position, and as an adoptee myself, I'm all for adoption myself. But for one reason or another, your family has decided they would like to have another natural child. This is their choice, not yours, and they will need your support. Perhaps they could investigate alternatives, such as an anonymous sperm donor, or use in vitro and somehow screen the embryo's genes. I don't know much about genetics, but this seems to be a situation where something could be done. If you are close to your cousin's parents, perhaps you could broach the subject to them and maybe do a little research to back you up. Please don't be judgemental, though, and offer your support no matter what their decision is. Good Luck!

Answer 4

I want you to know I have CF. My parents had four children and I am the only one with it. They were told I would die before age 13 and I am a 49 year old Mother of 22 year old twins. Yes it has been a hard life, and I dream of a cure. But, I believe God put me here for a reason. I am taking care of myself, my husband, my home and at times my 83year old Mother. I know of other adults with this illness who have led productive lives. Have hope! It is their choice if they want to risk it again. God Bless them and you dear!

Answer 5

my best friend has a child who has cerebral palsy and in a wheelchair and has learning defects, 7 yrs later she has another child (the drs said it was very rare this happen again), well the 2nd has all that and a trake and feeding tubes and had major heart surgery , and i think its a big risk for your cousin to take ,it can be quite expensive and their are alot out there needing homes already , her children are such a blessing , especially the baby she is just a little angel , so really its her decision to make and she needs to decide if she is willing to go thru that again , my friends husband is a big help to her with the kids and so are all her friends , you can email me if you want

Answer 6

I agree with you that they shouldn't have another or even adopt, What will happen to the adopted child when they are gone ?

My OH is a RN in a Skilled Care Facility, It's tough to hear about the little ones dieing

Answer 7

That is tough. I think for me I'd adopt -- I dont see how one could properly take care of a second special needs child (if the genetics dealt that card again) -- but that is a very personal thing.

Answer 8

just because one child has CF doesn't mean that every child they have will have CF. it is something that they need to talk about with their doctor. I have CF and i have a brother and a sister and they do not have CF.

Answer 9

I know you are concerned, but ultimately it's your cousin and her husband's decision. They are the ones who will have to live with the consequences. I'm sure this is a very tough decision for them. Just pray for them and hopefully things will work out for the best. Good luck.

Answer 10

I agree with you. Adoption would be the answer here.