I have a 9 month old with CF and my partner and I are at the moment discussing another child. Does anyone have 2 children with CF and has it been difficult? We live in Australia and we do have an appointment for Genetic councelling in about a month. Not sure that its going to tell us anything more that what we already know, but its worth going to.
2 children with CF
- Thread starter anonymous
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thefrogprincess
New member
My brother and I both have CF. When we were kids we just did all of our treatments at the same time and my mom kept a case of nebulizer cups and other equipment around so that she didn't have to be washing them all day, she could do one "load" a week. It really isn't more work, its just different.
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2sickkids
Guest
I have to sons with cf I was pregnant before my oldest turned a year old. It really is not any harder to do. We do clinic visits and treatments at the same time So I'm not at the doctor more often. I'am pretty sure my kids think everyone uses nubs and does cpt. It was not as hard this time around.
I have identicle twin boys with Cf, as well as a healthy older boy. I personally find it difficult, but also saying that Ive known no different with always having the two with cf. One of the hardest things is one child being admitted into hospital with out the other. Trying to be at the hospital and being home to do treatments on the other becomes very stressful. I find that I have more problems emotionally than anything else though, as both boys health has never been good and has declined quite a bit over the last few years (they were 11 yesterday). I wonder about awaiting lung transplants, ie. what if they need new lungs at the same time,who comes first etc. My mind is in a turmoil half the time.
Yes, it is difficult. We have two with CF, one without. Twice the treatments, twice the medications, twice the labs, twice the heart wrenching questions. I think it goes without saying that it is difficult but would I change it? Do I wish I only had one? Never. Every person has a purpose. Twice the possibilities 
2
2sickkids
Guest
Ok I just had to say that the comment made about rolling the dice and causing another to live with the disease is a very closed minded. I know many people feel that way but why did you feel the need to state it that way. I as well as the other parents with more then one child with cf answered the question as asked without trying to make another feel poorly. I can't stand people making comments ment to be hurtfull. Anyway if you read the posts of parents with more then one child you will see that they love their children and yes it may be a bit more to handle. I can bet that each of those parents look at their children as not a disease but the most precious people they will ever have the joy of knowing. No matter how long they have the gift of these children or how hard it may prove to be at times. As I see it loving and caring for my sons will forever be the greatest thing I ever do. I always take my son not in the hospital to the hospital with me if the other is admitted. We do breathing treatments there as well as cpts. Then when their father is done at work he comes and takes the other boy home with him.
look i have cf if the one child is too much of a hand full dont get any more. If your just worried about health for the baby you want, just take your chances and keep your minds open to what can happen. But no matter what is wrong with it love it all you can. If your that scared and dont want to go through that pain of having a messed up baby again, adopting is always a option. I hope i have helped but when it comes down to it no doctor, nurse, friend, or even me could tell you what to do. Just follow your heart.
lovingBenandCambree
New member
My mom had two children with Cf. Myself and my older brother. It is always difficult when you have someone with a terminal illness, but my brother and I have a bond that is fantastic. My mom had three children with my dad. The oldest did not have CF. You never know what could happen. I think it is 1 in 4 of having a child with CF after you have already had one, but those odds are beat all of the time. my mom was 2 of 3. Good luck in your decision. I know that many people told my mom not to have anymore children after my brother. If she hadn't I wouldn't be here. I am very grateful for the decision her and my father made to not listen to what others had to say, but to go with what they felt. Good Luck with everything and all I can say is follow your heart.
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>I have one child with CF. He is doing OK, but why anyone would purposefully roll the dice and cause (i.e. birth) another human being to live with this disease is beyond my contemplation.<hr></blockquote>
I did not ask for your opinion on the morals of having another child, I asked if anyone had two children with CF and was it difficult. I find it very arrogant that you believe you have the right to make such a comment, knowing that there are several people on the forum with 2 children with CF and that it would obviously hurt feelings. I had the sense that this forum was for support, not to attack and make others feel like crap, which is exactly what you achieved and I'm sure delibrately.
For everyone else I thankyou for you comments and answering my question. We have definitely decided to wait, at least for the next couple of years. I think there is alot to consider and not just with CF. For right now we just want to enjoy every moment we can with our daughter before she grows up and doesn't want us around LOL!
Thankyou again.
I did not ask for your opinion on the morals of having another child, I asked if anyone had two children with CF and was it difficult. I find it very arrogant that you believe you have the right to make such a comment, knowing that there are several people on the forum with 2 children with CF and that it would obviously hurt feelings. I had the sense that this forum was for support, not to attack and make others feel like crap, which is exactly what you achieved and I'm sure delibrately.
For everyone else I thankyou for you comments and answering my question. We have definitely decided to wait, at least for the next couple of years. I think there is alot to consider and not just with CF. For right now we just want to enjoy every moment we can with our daughter before she grows up and doesn't want us around LOL!
Thankyou again.
This is not an attack
I just wanted to say that I have a step-son with CF, he is 11 and stays with my husband and I through the summer and Christmas vacations. He is doing very well and we wouldn't change anything about him, well I take that back if I could take away the CF I would.
Anyway, in 2001 I discovered I was pregnant and I decided to have carrier testing done and I found out I was a carrier. It scared the crap out of me, I had the amnio done which revealed my daughter was a carrier of my husbands mutation but she did not inherit mine. WHEW! Was I relieved. We decided we would NEVER chance it again and I took bc pills religiously for years. Then on December 26, 2004 I took a pregnancy test at my husbands request, he thought I was pregnant because of my attitude, some weight gain, and my face was broke out like never before. The test was positive which marked the begining of the most difficult and emotional time in my life. I never thought this could happen to me. I was so worried. I couldn't take the CVS because they don't have a facility certified in doing them anywhere in my network so I had to wait it out until I was 15 weeks at which time I had the amnio and another agonizing one month wait for the results. April 18, 2005- A day I will never forget my genetic counselor called me at 8:34 am, at work and I could tell by the way she said my name the results were bad. She confirmed my worst fears that my son has cystic fibrosis and although I had tought myself through research so much about this disease and I had first hand knowledge due to my step-son whom has been in my life for the past 6 years and has CF, I felt so much devastation and fear and helplessness. I thought we could be that 1 in 4, but those odds are not right in my opinion. I think you have a much better chance of passing the mutated gene than you have of not passing it. My husband has given his to all three of his children and I have given mine to two of my three children. My oldest son (from previous marriage) is a carrier of my gene.
I am now 32 weeks pregnant and scared to death of the "unknown", every child with CF is different and the "what if's" are hard to live with.
I know your question was, "Is it difficult to have two children with CF" but that is very ambiguous. Do you mean will it be difficult for you or for your unborn child? Because in my opinion the one who has to live with this disease is the child born with it. You will live with the emotional pain of worry and you will live with the responsibility for taking care of his medical needs until he reaches the age of caring for himself, but he will live with the physical aspects and limitations. I think the IVF might be something for you to consider, I think that is what its called. They can actually implant an embryo that is not effected and give your child a much better chance at a healthy life.
JMO
Jen
I just wanted to say that I have a step-son with CF, he is 11 and stays with my husband and I through the summer and Christmas vacations. He is doing very well and we wouldn't change anything about him, well I take that back if I could take away the CF I would.
Anyway, in 2001 I discovered I was pregnant and I decided to have carrier testing done and I found out I was a carrier. It scared the crap out of me, I had the amnio done which revealed my daughter was a carrier of my husbands mutation but she did not inherit mine. WHEW! Was I relieved. We decided we would NEVER chance it again and I took bc pills religiously for years. Then on December 26, 2004 I took a pregnancy test at my husbands request, he thought I was pregnant because of my attitude, some weight gain, and my face was broke out like never before. The test was positive which marked the begining of the most difficult and emotional time in my life. I never thought this could happen to me. I was so worried. I couldn't take the CVS because they don't have a facility certified in doing them anywhere in my network so I had to wait it out until I was 15 weeks at which time I had the amnio and another agonizing one month wait for the results. April 18, 2005- A day I will never forget my genetic counselor called me at 8:34 am, at work and I could tell by the way she said my name the results were bad. She confirmed my worst fears that my son has cystic fibrosis and although I had tought myself through research so much about this disease and I had first hand knowledge due to my step-son whom has been in my life for the past 6 years and has CF, I felt so much devastation and fear and helplessness. I thought we could be that 1 in 4, but those odds are not right in my opinion. I think you have a much better chance of passing the mutated gene than you have of not passing it. My husband has given his to all three of his children and I have given mine to two of my three children. My oldest son (from previous marriage) is a carrier of my gene.
I am now 32 weeks pregnant and scared to death of the "unknown", every child with CF is different and the "what if's" are hard to live with.
I know your question was, "Is it difficult to have two children with CF" but that is very ambiguous. Do you mean will it be difficult for you or for your unborn child? Because in my opinion the one who has to live with this disease is the child born with it. You will live with the emotional pain of worry and you will live with the responsibility for taking care of his medical needs until he reaches the age of caring for himself, but he will live with the physical aspects and limitations. I think the IVF might be something for you to consider, I think that is what its called. They can actually implant an embryo that is not effected and give your child a much better chance at a healthy life.
JMO
Jen
Life will never be perfect. So I don't see why anyone takes these tests during preg. anyways. there is always chances things can go wrong and people will try to make things perfect.... Perfect babies perfect anything but you know God gives us cf babies because he knows we can take care of them and love them always...I would never change having my daughter because she is watched over and I can handle the care she needs and do well. That is why she has cf. Life isn't suppose to be perfect.
I don't think anyone suggested life is suppose to be perfect. But we do what we can in life to avoid trauma to our emotional and physical selves, do we not? I don't know many people who intentionally put themselves at risk for disease or physical harm, and to the contrary most of us go out of our way to avoid it. You can put your trust in God but you cannot expect any God to protect you from yourself. You don't just throw your kids in the back seat and say, "oh well if a bus rear ends me "God" will protect us, or it was just meant to be", or do you? We vaccinate our kids, we put them in seat belts, we watch there every move all day until they are sure to understand the dangers that lerk around every corner. I don't see how you can suggest that having a baby knowing the potential for this disease should be considered a matter that is out of your hands. The choice belongs to no one but the parents that make the decision. You can neither thank God for your baby not having CF nor can you blame him for your baby having CF. YOU made that decision and you will live with it. Otherwise you are insinuating that those of us with CF children or with CF were intentially given this disease by God and what kind of God would give a baby CF? I hate when people suggest that.
This dicision is up to the parents and I believe they will make the right decision what ever that may be. But I completely disagree with putting all of this on God. I admit I wanted another baby after learning I was a carrier as well as my husband and we did have a conversation about it one night after we had been out with friends and had a few drinks in us. My husband said, "lets just do it, we need another baby around here" and that broke my heart, because I wanted to give him another baby but my gut feeling was that we would not be as fortunate and I did not want to risk it, but that is not to say this decision is right or wrong. At the time my career meant a lot to me, I had 6 years on the force and he is active duty Marine Corps, neither one of us wanted to give up our careers to take care of the baby if he turned out to be sick. Now, with the baby coming sometime next month I have put in my resignation. 7 years into a career that means so much to me is gone, because I want to be home with the baby. I don't want to put him in a daycare. I do not blame this on the baby or my husband or God, this just happened. But its still hard to swallow sometimes.
The reason I took the tests was for MY BABY'S HEALTH, Duh. Most of the pregnancy tests that are conducted today have taken us out of the dark ages, having these tests available helps pregnant mothers make decisions about there pregnancy. I recently discovered I have gestational diabetes which is causing my baby to gain a lot of weight, this diagnosis was very helpful, now that I know I have it I can treat it. The amnio and ultrasounds help doctors properly care for my baby and make plans for my delivery. The hospital I am scheduled to deliver at is not capable of performing surgery on my baby and I find it very helpful to be able to plan ahead in case he needs emergency surgery, which he most likely will. And I know this because of the tests that I've had done. Why wouldn't I want my baby to have the best in medical care from the very begining? I personally believe the tests available to women today are fantastic! I don't judge a woman who knows her baby has a 1 in 4 chance and decides not to havie testing done but I think all women are happy about the fact that if they choose to they can. Some women may feel the diagnosis doesn't make a difference to them, but it made a huge difference in my life and the rest of my family. I feel great relief from knowing this baby has CF there was so much I've had to do to prepare for this, and I'm still not completely there, but I'm closer than I would have been if I didn't know.
Jen
This dicision is up to the parents and I believe they will make the right decision what ever that may be. But I completely disagree with putting all of this on God. I admit I wanted another baby after learning I was a carrier as well as my husband and we did have a conversation about it one night after we had been out with friends and had a few drinks in us. My husband said, "lets just do it, we need another baby around here" and that broke my heart, because I wanted to give him another baby but my gut feeling was that we would not be as fortunate and I did not want to risk it, but that is not to say this decision is right or wrong. At the time my career meant a lot to me, I had 6 years on the force and he is active duty Marine Corps, neither one of us wanted to give up our careers to take care of the baby if he turned out to be sick. Now, with the baby coming sometime next month I have put in my resignation. 7 years into a career that means so much to me is gone, because I want to be home with the baby. I don't want to put him in a daycare. I do not blame this on the baby or my husband or God, this just happened. But its still hard to swallow sometimes.
The reason I took the tests was for MY BABY'S HEALTH, Duh. Most of the pregnancy tests that are conducted today have taken us out of the dark ages, having these tests available helps pregnant mothers make decisions about there pregnancy. I recently discovered I have gestational diabetes which is causing my baby to gain a lot of weight, this diagnosis was very helpful, now that I know I have it I can treat it. The amnio and ultrasounds help doctors properly care for my baby and make plans for my delivery. The hospital I am scheduled to deliver at is not capable of performing surgery on my baby and I find it very helpful to be able to plan ahead in case he needs emergency surgery, which he most likely will. And I know this because of the tests that I've had done. Why wouldn't I want my baby to have the best in medical care from the very begining? I personally believe the tests available to women today are fantastic! I don't judge a woman who knows her baby has a 1 in 4 chance and decides not to havie testing done but I think all women are happy about the fact that if they choose to they can. Some women may feel the diagnosis doesn't make a difference to them, but it made a huge difference in my life and the rest of my family. I feel great relief from knowing this baby has CF there was so much I've had to do to prepare for this, and I'm still not completely there, but I'm closer than I would have been if I didn't know.
Jen
lovingBenandCambree
New member
I don't mean to talk for anyone but I think that all that anonymous was saying was that why test while you are pregnant if you are already pregnant. I agree with that, due to my own morals. I have CF and when I found out I was pregnant I didn't get tested because I wouldn't have changed anything anyway. No life isn't perfect, and yes we do take our own precautions to best fit our own needs. But God does give us these things to protect ourselves. I know that He is completely aware of all of us and our individual situations. Some people may think that they are cursed because they have an illness, but I see it as a blessing and has taught me many wonderful things throughout my life.
Emily65Roses
New member
I don't take a stand either way on the abortion issue as far as "damaged" fetuses go (like CFers). But to each her own, and it's a personal decision that's different for everyone. If someone is afraid their fetus may have CF, and they would consider aborting it if it were true, they have every right to test in utero to see what the results are. I don't mean to start any argument. I just know that there certainly are some people who would abort based on defects. And while I don't necessarily agree, it is each individual's decision. <img src="i/expressions/rose.gif" border="0">
Emily65Roses
New member
"Wouldn't it be nice if we could all KINDLY listen to each other's opinions, even if we respectfully disagree? I think this can be done without attacking or adapting a "holier than thou" attitude....right? We're all going to have different ideas - that's OK!"
Did I say something offensive???
Did I say something offensive???
lovingBenandCambree
New member
I hope that I didn't say anything to offend anyone and I certainly wasn't trying to take on a holier than thou approach so I hope that what I said wasn't misconstrued.
Emilee
Emilee