Need perspective

[grace4u]

My husband and I are both carriers ofthe Delta F508 gene. We don't have any children, yet, and are trying to decide if we should go ahead. Our question is for anyone out there with CF or a parent of a child with CF... do you think it would be selfish of us to go ahead and try having children, knowing about the 1/4 chance? Is it fair to them? Do you think they would resent us for knowing and going ahead with it anyway? Or would they be grateful we gave them the chance to live their life and make an impact on the world? We don't want to decide not to have children out of fear and have the world miss out on a beautiful life. We have been agonizing over this for 6 months now. We would greatlyappreciate your honest advice.
Thank you!

 

[edan]

Hi there. I am sure you thought of this, but just in case...
Have you thought about ivf? From one embryo cell that can test all 24 chromosome pairs for tisomies and cf snd even gender if you want. It is really amazing. We have just gone through this and are currently 7 weeks pregnant. still early I know, but going in the right direction.

We have 1 daughter with cf. she is pancreatic sufficient, so we don't deal with the digestion issues (which adds a great deal of complexity to the disease). We have come to deal with the lung side of things and are so grateful for our little girl. She is very healthy, happy and active at this point, and definitely glad she was born but you never know what the future holds. Cf, and any disease really, can cause a great deal of strain on a marriage. I personally have 2 very good friends with cf kids and their marriages didn't make it. I am sure there were other issues as well, but a relationship needs to be really strong to endure the added complexity cf has to offer. That said, there are many marriages that are brought closer together, like mine. It just depends on he personalities involved.

Good luck with you decision.

Edan

 

[kross10911]

I have DDF508, and in my previous marriage my ex husband was also a carrier of DF508 and we were going to still have children the natural way. But obviously he is my ex and that didnt work out lol. Im now remarried and my husband is not a carrier and I am 6 months pregnant with a girl.

Anyways. It can be a tough choice. I personally look at it this way. At no point in my life have I ever thought I wish my parents didnt have me because I have CF. I have not had an easy time by any means but I have not had the toughest time either like some others who have CF.

Being older now, If my husband had been a carrier we were going to do the IVF to lessen the chance of CF, just because with me already having it would make it more difficult to have two CFers in the same house due to passing things back and forth.

Honestly it comes down to your prefered method ( if you want to do things natural or IVF, and that can be expensive, unless you have insurance that might help cover some of it since IVF is cheaper than a life time of care for CF) and the chance you are willing to take. Its only a 1 in 4 chance, and I am a firm believer that CF is not an end all. In fact I wouldnt be the person I am today if it wasnt for CF. And I mean that in a positive way lol.

Good Luck!

 

[grace4u]

Edan,
Thank you for so much for sharing. We did look into ivf extensively, but not really sure if it's for us for quite a few reasons. I'm glad to hear that it is working for you, though! Congratulations on your pregancy! I hope all goes well.

Thank you so much for sharing about your daughter. She sounds precious and full of life. That's what I don't want to miss out on.

I also appreciate your thoughts on how it affects the marriage. That is good perspective and something we are carefully considering. Awesome to hear it's brought yours closer together!

So good to hear from someone with personal experience... thank you! We will take what you said into consideration.

 

[grace4u]

Kate (kross),

Wow... great thoughts! You said that you wouldn't be the person you are today, if not for CF. I guess one of the things I've thought through out this process is exactly that... if we don't have children, what kind of incredible person might we miss out on... one way or the other?

Thank you SO much for your perspective!

 

[nmw0615]

As a child with CF, I have never once resented my parents for having me. I've had more tough days than I can count, but I'm eternally grateful my parents gave me the chance to live. After I was born, they spent a couple years trying to decide if they wanted to risk having another child born with CF, and they decided the benefit of bringing another soul into this world was worth the CF risk. I've never once considered by parents selfish for their choices. I love my family and I love my life, CF and all.

I also asked my parents what they thought. My father said do it. Even if your child has CF, there's so much love going around, it's worth it.

 

[grace4u]

Beautiful. Thank you for sharing your heart about this...and bless you. Thanks to your father for his advice, as well. Sounds like you have a wonderful family!

 

[katethekid]

I have to say I've never resented my parents or blamed them for my CF. My mom and I joke about it, but it's all humor to make light of the situation. I'm thankful for the time I have with my family and my son. We adopted my son Samuel, my CF caused me to be infertile. I say follow your heart and consider all the options Good luck to you and your husband.

 

[jbrandyn]

I have never resented my biological mother for it, I almost killed her during the pregnancy.
That said, please do not take the risk of having children unless you get a sperm donor verified not to have a cf gene. I understand the want to have children, need almost, and I have seen it in other people with cf who want to have kids. That is great, kids are fun, but knowingly taking the risk of having a child with CF, as you would be doing, seems different from parents who did not know they both had the genes. CF is hell it hurts to breathe, your belly will have problems, you will get sick, possibly have bowel obstructions. Why would you take the one in four chance of putting a baby, a child, ultimately another person, through that hell.

There are plenty of good kids who need to be adopted. And we are not bad kids, I know someone will tell you that adopting is a bad idea because they all end up bad. It's not true, sure some do, but most turn out OK. What matters is having loving parents who try and I think that choosing not to take the chance with CF and adopting is a better expression of love than knowingly risking the life of a child you could make.

I mean no offense, but if you have a baby with cf that of course you will love it, you will also have to endure sitting by as it endures a lot of hardness. My father always wishes he could take my place. You have the ability to not add to our rolls if you adopt or use a donor.

Best Wishes

 

[grace4u]

Katethekid,
Thank you for your thoughts and congrats on the adoption of your son! He looks adorable!

Jbrandyn,
I appreciate your honesty. We have been considering adoption as one of our options. My brother was adopted and is a great guy! I know it can be a beautiful thing. Thank you so much for sharing your advice.

 

[katethekid]

grace4u,

Thanks you He is now 7 months and the highlight of my life.

Caitlin

 

[artiste]

Grace4you,
Another thing to consider...I have mild CF, not diagnosed early. My son was diagnosed before me, at the age of 2. His is mild also, and we get along in our lives just fine. Another son had cancer, Hodgkins, as a teenager. No cancer in the family--where did this come from??? The chemo damaged him physically and emotionally he has never been the same--no hair came back, damaged lungs, kidneys, heart. People say I'm lucky he lived...but it's not him--of course I'm glad, but I jokingly say that I love this guy, even if I don't recognize him in any way. What I'm trying to say is that the future is not certain...you never know what will happen!! And my husband, a self-centered pilot, couldn't take it and left. And, I might add, we are so much happier without him!! Who knew!! So go ahead and have that baby and get on with your wonderful life--whatever it holds!!
Karen

 

[Ratatosk]

We didn't know we were carriers until DS was born with a bowel obstruction due to meconium illeus and spent about 2 months in the NICU recovering from his surgery. Double Delta f508 means the child will most likely be pancreatic insufficient and require digestive enzymes to eat anything with fat or protein. While born with normal lungs, eventually the lungs WILL be effected due to the extra thick sticky mucus.

Do I regret having our child? No, I don't. After thinking long and hard about having more children, we DID decide not to, that it wasn't worth the risk as we know several individuals who have more than one child with CF, but thought they'd just take the chance. DS spends several hours each day doing vest/chest physiotherapy treatments. He needs to take numerous pills to digest fat, keep infections at bay, pills to keep his liver happy, vitamins, nebulizer treatments...

 

[scarecrow]

This is a decision that you have to make for yourself, but my feeling is that with the number of healthy children in the world today who are looking for a loving home it seems a little, or maybe a lot, selfish to choose to bring another sick child into the world. That is just my opinion and I apollogize for any feelings that may be hurt. We all have dealt with a lot, some more than others. I don't blame my parents because they had no idea what was wrong w/ me until I was 7. But if I knew that they had chosen to have me w/ the knowledge ahead of time that I would have this terrible disease I would absolutely resent them.

 

[katethekid]

Ratatosk made me think of something to add. I am the youngest of three children. I am the only one with CF and my brothers are completely healthy.

 

[patrish22]

This is a tough one. I don't envy those having to make this decision. We raised 3 with CF. Our identical twins girlsand their brother were not diagnosed intil early teens. Our girls passed at the ages of 25 & 27, their brother is doing very well. It's been a long hard road, although their illness gave us a different family approach. We appreciated one another and life more. Would I do it again if I had the knowledge, YES! Early detection (although not a guarentee) and treatments is key to a good life. I could never trade the gifts and life lessons my children have given me.

 

[grace4u]

Wow... I appreciate the time and heart that has gone into each of these responses. We have been giving careful thought to each one. You all have wonderful, honest input! Thank you SO much!

 

[Aboveallislove]

Our situation is different because we didn't know we were carriers until after our son was born, but then the struggle was whether to have more children with this knowledge. This is what I wrote when someone asked a similar question before and it is going to be totally stream-of-conscienceness and obviously completely our personal take which might differ from many others. When our DS was diagnosed, it was almost a double-whamming to me of the diagnosis and a diagnosis of infertility. But at the same time I knew in my heart I wanted more children--no matter the "risk." What I struggled with most was 1) whether it was fair to another child and 2) whether we could handle it. My heart ached for another baby but I hesitated talking to too many people because I knew others wouldn't see my perfect child as well, my perfect child, and thus would view the thought of having a second child in the same light. What healed my heart was when a dear friend said in response to my fear of it being unfair to a child, "oh, but he would always choose life." We were still exhausted, though, and at that point just left it up to God and prayed that he'd make it an easy choice. When we were able to handle trying more proactively, strangely, my fear of CF wasn't there. I also had such joy thinking what a gift a sibbling would be to our DS. We haven't been able to get pregnant again and likely won't given we've been trying fortwo years with the assistance we are morally comfortable with, but I won't have any second doubts. And I'll love to be able to tell DS that we really wanted more children and to remind him that he use to pray with mommy and daddy for a baby brother and sister.Throughout the process, DH wasn't quite as far along as I was--he wanted another child too, but the fears played too heavily in his heart. I told him all of my thoughts and basically left it as I don't want this unless you are 100% sure. That doesn't mean we both didn't have times when the fears were more in the forefront of our heads, but it also helped for me to ask myself: Would you still want DS if you knew he would have CF. And the answer was an unbendable "yes." I'll keep you and your family in my prayers as you struggle with what is right for your family.

 

[artobsessed]

I am 17 and I have CF. I think I may have that mutation, but I don't remember because CF is difficult no matter what mutation.
My parents, in 1995, had no idea that either of them had been carriers, and when I was born and diagnosed at age 2, they were scared to death. I have an older brother who does not have CF (18) and a younger sister that also does not have CF (12).
You are in a very lucky position going into parenthood because you are totally aware of the consequences. My parents weren't as lucky, but I'm sure if they wouldn't have changed anything, because aside from my illness, I can be the most level-headed of my siblings.
CF is very costly and very scary for parents. I myself have lived through the disease and have experienced all the pain, discomfort, and fear associated with having this life-threatening disease. I have thought about it a lot, and I decided that when it comes time for me to have a child, and my husband is a carrier, I will proceed with trying to conceive. Within my first trimester, however, I will have the baby tested for CF. If the baby is positive for CF, I will not proceed with having the child (i.e. have the child aborted.) I know this is incredibly offensive to some people, but I could never allow myself to bring someone into this world only to experience pain and fear, like I have.
I'm sure that when that day comes, it will be incredibly difficult for me, but I will have to continue on the basis that I will not have knowingly opressed my child with a disease like CF.

 

[grace4u]

Artobesessed,
Thank you so much for your reply... really appreciate it!