HI, I am a parent of a child with CF. Her two younger siblings do not have CF. When my second child was born we didn't know the CF dx yet. When we decided to have a 3rd child we did know there was a chance of CF. The decision was very very difficult. Once I became pregnant I loved the baby right away whether or not it had CF. Luckily, she does not have it but if she did we would deal with it. I agree with the other parents that no one knows what the situation is like except a parent who has a child with CF. It is probably one of the hardest decisions you will ever make. I think that it is very important for people on the outside to not be judgemental about peoples decisions but to be supportive.
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Debating to have a 2nd child??
- Thread starter anonymous
- Start date
Kylie, When I said that we considered having another child for when we were gone I never meant for babysitting. It was a polite way of saying when my husband and I pass away (not to go to the movies)we would like her to have sibling support and care, just as we did when our parents passed. We cannot imagine having gone through that alone. Our parents also left us knowing that we would take care of each other, and I just want the same for my daughter. Because we decided not to have other children we try to make sure she is close to cousins and with her personality I am sure she will have many friends in her life that will see her through tough times.Perhaps there was some kind of confusion but I NEVER considered having another child to babysit my cf child. I can hire someone for that!
I agree that no one knows what it is like to be a parent of a CF child, unless you are one. At the same time you do not know what it is like have CF. I do have CF, and know what it is like. I personally have a hard time understanding why a parent with a CF child would risk passing on CF to a second child, but that's just me, and I hate seeing kids struggle. No child should have to suffer.We could keep this argument going for months and add pages and pages to this thread, for what. We can't stop you from having other kids, and potentially having more kids with CF.I am sure you have all heard this saying; never judge a person until you have walked a mile in there shoes.If you could only walk a mile in a CF persons shoes, maybe you would change your mind.Dave 29 w/cf
It is true that we as parents of children with CF cannot walk in your shoes, but we do walk everyday dealing with CF and how it impacts our children's lives as well as our own. We are not considering to have another child without many thoughts regarding the impact of CF on his/her life as well as on our lives. It is heartbreaking to think that my son that I have now may not live a full life, have his own biological children, etc. However, it is also heartbreaking to think that his life is not one that is just as good or even better than my own. He lives a good life with people around him that love him and another child with or without CF would recevie the same as he has been given. He and every child born is a gift. I live each day with the belief that a cure for CF will be found during his lifetime, maybe not realistic, but it is a reality that may occur. I do not think of CF as defining his life it is something that he has to deal with each and everyday, but not who he is. Mother of 2 year old w/cf
<blockquote>Quote<br><hr><i>Originally posted by: <b>matthew</b></i>It is true that we as parents of children with CF cannot walk in your shoes, but we do walk everyday dealing with CF and how it impacts our children's lives as well as our own. We are not considering to have another child without many thoughts regarding the impact of CF on his/her life as well as on our lives. It is heartbreaking to think that my son that I have now may not live a full life, have his own biological children, etc. However, it is also heartbreaking to think that his life is not one that is just as good or even better than my own. He lives a good life with people around him that love him and another child with or without CF would recevie the same as he has been given. He and every child born is a gift. I live each day with the belief that a cure for CF will be found during his lifetime, maybe not realistic, but it is a reality that may occur. I do not think of CF as defining his life it is something that he has to deal with each and everyday, but not who he is. Mother of 2 year old w/cf<hr></blockquote>
I agree with you that every child born is a gift, but you just said that is is heartbreaking to you because your son may not lead a full life. So if a parent of a CF child is heartbroken because there child may not live a full life plus they have to watch the struggles of a CF person (depending on the mutations of course because some people are worse than others). Why would you have another child and potentially put yourself through the "heartbreak" a second time? Somebody please answer the question.Dave 29 w/cf.
Hi,my daughter had her first child at a very young age she was only 16yrs.It was enough that she was to young to have a child,but to have one with cf.My sister was born with cf and we were never told about this,what made matters worse is that by us not knowing about the cf and that we were carries made my daughters life a nightmare.My sister is now 45yrs and from what I can remeber she really did not have much trouble from her cf until now.Well,my daughter and fiance always talk about another child some time down the line but just really are not sure for the simple fact that bring one child into this world with cf is hard enough.My grandson has gone through enough in his 3yrs of life.He was diagnoised at two days old,He lost 40% of his intestines and things did not get better.He spent the first two months of his life in the hospital,not to say the least he was 6wks early.He has had hernia surgery,they thought his liver was giving up,but it came back that the lipids was cloging his liver,then he came down with pseudomonas,staph then another blockage which thank god was fixed with a very strong laxitive,and not to say but the fight to get him to take his enzymes.I understand the need to have another child but at what cost to the child.We can't fill are needs and not think what that child will go through just because we want to fullfill are needs to have another child in our arms,I find this wrong to take chances with a persons life.Yes I would love another grandchild,but not at that cost.
I also would be curious to wonder why he lost 40% of his intestines and it does sound like Crohn's Disease. I think the question of whether to bring another child into the world (CF or not) is a personal decision and has to be answered by the people involved (and then they have to be responsible for the decision they make).
Sounds like most of us would agree with CF carrier testing PRIOR to conception which IS an option but doctors try to "talk people out of it" because they know most of the time insurance agencies won't cover the cost of the test (WHY???) and the doctors don't want to chase people that are paying out of pocket themselves. In most cases the cost of the test is less than $300.00 - a small price to pay in my opinion. We will not be having anymore children without PGD or adoption. I agree to allow a child to enter the world knowing the 1 in 4 risk is something I do not agree with.
Whether or not to have another child is a VERY personal matter. Everyone has their own opinion on the matter. As a mom of a 12 year old with CF, I completely understand what everybody is saying. So many emotions are involvled with CF. My daughter almost died before she was diagnosed at 6 months of age. I am so blessed to still have her here. I do know what it is like to lose a child (my first daughter died at 10 months old....not CF related). They say 1-4 or 25%. I am not sure they (the doctors) can say for sure. I have a friend who has a 8 year old with CF and a set of twin girls 5 years old with CF so that shoots the 1-4. Now, as far as "putting another child through it"........it is all in how you choose to raise your children as to whether or not it is a "burden". The medicines and treatments are just part of life for a CF person. It is just like brushing your hair or taking a shower. I don't have anymore kids after my "cf-er", ONLY because I had to have female surgery. Would I take that 1-4 risk? Absolutely! I do believe that there will be a cure one day. Maybe not for my daughter to benefit from it, but for others! Dave, you do sound bitter to me, like maybe you need some one on one. You were diagnosed late in life. That is a blessing in itself! The way you talked, it sounds like you are able to produce children. Most males with CF cannot. If your fiance' tested negative, you most likely wouldn't have a child with CF. You said it wasn't fair for your child to grow up without their dad. Well, it wasn't fair to all the kids that lost parents in the 9-11 attacks, or the ones whose parents die in a car accident, or the ones whose parents get cancer.....I could go on forever. I do agree with what has already been said, that this site is for support. If you can't give support.............. If anyone would like to contact me, please e-mail me at copswife113@aol.comI would love to talk to some of you. Especially you Dave! Prayers to all.......Love ya!Steph
I don't care how I sound to you Steph. This topic is probably the most important on this entire board. There have been many people who have expressed there OPINION on this thread including yourself. I always put my name at the bottom of every message I write, so if you don't like what I have to say you can look at the bottom of the message first. If you see my name then don't bother reading it.Dave 29 w/cf
When I say "heartbreaking" I am not describing my thoughts that his life is not one that is meaningful. My son's life has been and will continue to be a wonderful gift given to him, and us, regardless of his CF. It is heartbreaking to think that he will maybe not live out a full life, but my belief truly is that a cure will be found and he will have that oppurtunity. I am one of those parents that make sure that he receives all of his medicines and we do his therapy daily, he does and is able to do what all the other children his age do. He is not impaired mentally, nor developmentally. He has much to offer to others now and will as he gets older. How can I not think that his life is meaningful? He struggles medically with CF, I agree, but he receives good care and we will assure that this continues to enable him to live to see the cure. If I always thought negatively regarding CF I would be miserable as would he. He is being brought up that this is not who he is, but something that he has to deal with. My husband and I will make an informed decision and one that we know the consequences of. We have yet to commit either way, but I know in my heart that when we do it is for the right reasons, because we do know all of the "stuff" that one goes through living with CF.
I have to say to Dave: I don't think you sound bitter at all, just passionate! You are a person who has CF, not a parent and you are a voice that should be listened to. People have a right to make their own decisions, and you have provided an important viewpoint that might help someone make their decision. I appreciate all the opinions that I have read on this board and I do agree with your position, Dave. Others will agree with someone else's opinion. That's the whole point of these boards. It's not about taking sides. It's about finding peace with our choices and our lives as we struggle with the impact of Cystic Fibrosis.I also want to add that Dave's choice not to have children is a very selfLESS (opposite of selfish) choice. You are putting your own wishes and desires aside for what you think is best for your children. Actually, someone like you would make an excellent father.God Bless to AllJenamom to 3yr old son with CF
Hi Dave,I agree with you also, it is a awful subject and not everyone is going to agree.But my first child has CF and my partner and I have made the decision to not have any further children with CF.Not because I don't value their life, but becuase I value my sons and I want to be able to provide him with every opportunity for good health, longevity and if he does become quite sick in the future the ability to be able to give him a lot of attention.That is not to say that we won't have any more children because one day we will when we feel the time is right, but through other means like PGD.But that is a very personal decision and I don't think that any of us can raelly judge each other as, I know we all struggle with the same disease but each one of our paths are different.Listening to the views of many adults with CF has helped me feel that the decision we have made is the right one.I hope that I haven't offended anyone else for the choices that they have made as I am not judging just saying how it is for us.RebekahMother to Matt 16mths w/cf