I was diagnosed at 18mos. with CF I am now 27. I am grateful most days I that I was born (if I said everyday it would be lying, but having CF isn't always the reason for not being grateful). When my brother (a carrier) and his wife decided to have children, she was tested to see if she too was a carrier - she was not, the moment he told me she wasn't I began to cry - I didn't realize I would be so relieved. Now I am at the point where I am considering children, of course my own health is an issue - as for the possibility of my children living a future without me, I believe that they would have the love and support of their father and the rest of my family. It is important that the one I marry be willing to accept my future demise - and be able to accept the responsiblity of single fatherhood. But I also look at my life as it has no end, when that end on earth will come I don't know, and whether it be from CF - I don't know. As for a child having CF, of course it depends on my partners genetics, I guess in some ways I have already taken the road of ignorance for if I were to be pregnant today, it would be left to fate - and I think I might prefer it that way. I took a genetics class this past Spring during my last semester at college. What I came away from that class with, was, that even though CF often sucks, I am so happy that I was born with CF and not some other of the horrible diseases that are out there. With every conceived child there is the chance of a disease, even taking the wrong medication (teratogens) for a normal person can cause birth defects. I knew a young man born without fingers and feet because of a prescribed drug his mother took. I guess I am really not saying anything that hasn't been said. In the end it is a choice. And wanting to have another child and risking CF would be tough, but as my genetics instructor and I spoke on this issue, she said too their are so many worse things to be born with. I have been with CF for 27 years, do I wish I didn't have it YES and NO. Without Cf I wouldn't be this person, I truely believe that, and I think this person is special!!Sarah27 Female w/CFIf you believe in God than you believe he has a master plan, believe in his plan - for everything there is a reason and a purpose.
Debating to have a 2nd child??
- Thread starter anonymous
- Start date
Hi Sarah,I just read your post and I think you have such a wonderful outlook on life. I have a daughter who is 6 with CF and two children w/o CF. I agree with you that life is harder for her, but it is part of who she is. She is a lot more than a child with CF, she is a wonderful little girl filled with spirit. Enjoy your life and live it to the fullest.
we have two children. lizzie 2 1/2 no cf and grace 15 months w/cf. i had an emergency c-section with grace as her bowels had twisted and she had a meconium ileus. She was diagnosed at two weeks, was hospitalized until 3 months when we got to bring her home. She is amazing. She has changed our lives in so many ways, but i think most importantly has brought so much new perspective to us about what is truly important in life. Having more children right now seems inconceivable because of what we have gone through with little Gracie in the past year and a half. But in the future.... I'm almost sure we will have another child. My PERSONAL reasoning for this
Let me add that Grace has been doing extremely well since she returned home) I believe that we all have/will have our own personal challenges, whether it be physical or other trials that we may go through, and personally i believe that those were decided long before we were born. i know that my little gracie was sent to my husband and i for a reason. With or without cystic fibrosis, SHE WAS MEANT TO BE MY BABY in my eyes. At her diagnoses we had a dr. that recommended we didn't have any more children because more children meant less detailed time in care for Grace. I've thought a lot about what she said and have come to the conclusion that the kind of attention/care you give your child with cf is just as much about the kind of parent you are as it is the amount of children you have (to a certain extent) i don't necessarily mean you can have a ton of kids with cf and take good care of them all because i know for me it would be physically impossible. But i do mean that i know my husband(who is extremely supportive in the care of Gracie) and i could handle the care for one more child. We've just decided when the time is right we will go into the situation with the assumption that our new baby WOULD be born with cf. we have considered invitro with gene manipulation but there are so many moral issues with that that i'm not sure if its right for us.(not to mention the fact that its a little hard to come up with 30-40k) i hope noone is offended by my comments. they are strictly my personal views and decisions for our family. everyone just has to do what you feel is right for your own family.
Let me add that Grace has been doing extremely well since she returned home) I believe that we all have/will have our own personal challenges, whether it be physical or other trials that we may go through, and personally i believe that those were decided long before we were born. i know that my little gracie was sent to my husband and i for a reason. With or without cystic fibrosis, SHE WAS MEANT TO BE MY BABY in my eyes. At her diagnoses we had a dr. that recommended we didn't have any more children because more children meant less detailed time in care for Grace. I've thought a lot about what she said and have come to the conclusion that the kind of attention/care you give your child with cf is just as much about the kind of parent you are as it is the amount of children you have (to a certain extent) i don't necessarily mean you can have a ton of kids with cf and take good care of them all because i know for me it would be physically impossible. But i do mean that i know my husband(who is extremely supportive in the care of Gracie) and i could handle the care for one more child. We've just decided when the time is right we will go into the situation with the assumption that our new baby WOULD be born with cf. we have considered invitro with gene manipulation but there are so many moral issues with that that i'm not sure if its right for us.(not to mention the fact that its a little hard to come up with 30-40k) i hope noone is offended by my comments. they are strictly my personal views and decisions for our family. everyone just has to do what you feel is right for your own family.What a wonderful post! I agree with your perspective. We, too, decided to have another child after our first child, Sophia, had cf. We knew that we were going to be blessed regardless of the circumstance. Jack is almost a year old. He too has cf. To be honest, I really felt that our second child was going to be in the 75% of no cf. I should have had your perspective of to be expecting another child with cf. We love him SOOO much and we know that they are both the children that God wants us to have. I just like your idea of expecting a child with cf (emotionally) that way you would be prepared if the diagnosis eventually came. Sharon
HollyCatheryn
New member
My parents were counselled by a very wise young man with CF when I was little (2-ish) and they were considering having another child. They had already been councelled by the geneticists and doctors not to get pregnant again, because even though I was pretty healthy "what if the next one isn't so lucky?"and "your first child's care might suffer if you have 2 to care for." The wise young man with CF said to my parents, "If God came to you and said, `you're going to have a baby and I have the <STRONG>perfect</STRONG> one for you. She comes with some extra baggage and life will at times be hard for all of you. So, if you like, you may pick out one of these other babies instead.' What would you do?"My parents decided that they would let God choose whether or not they got pregnant again and whether or not that child had CF. Incidentally, my younger sister does not have CF. She is a lovely, talented, hard-working, newlywed. It may have been hard to have 2 people in the house with CF, but quite honestly for most of my growing up CF was not the toughest thing my family had to deal with.Hope perhaps this helps some.
Hi, I guess I should of explained why he lost that much of his intestines.When he was born nobody even new there was something wrong until a few hours later when the nurse told us that they needed to send him to another hospital,because his stomach was beginning to extend.By time they did there x-rays ultrasounds and what ever else his peds surgeon went in his intestines had burst and left a big mess and not to say that 40% torn to where she could not repair them.But regretably he has cf,he is on 5 different in halers,Miralax,enzyems,also something for acid reflux,which he no longer takes for the acid reflux.Well he never was tested for cf,but with the fact of his Duodenum and Jejunum were the affected intestines,that lead them to the cf.
Dave,you can give your opinion....but try not to mess with people faith...it is mean. We all try to understand you, even if we don't agree with you...we try to respect you. So try to do the same...don't tell no one what god did or not...by the way...try to deal with your issues...and let people deal with theirs.Everybody knows your opinion about having a secong child...so I don't think is necessary to you to post in this topic anymore...I understand you and support your choice of not having kids...but I agree with someone that told you are bitter...most coz of the last post you answer to...val
I have faith and I do believe in God. But I do not believe that God gave my child CF. God gives me faith, clarity, and angels disguised as friends and family. Dave is free to share his opinion and he is only telling you what he believes. Just because it challenges your decision does not make it wrong.
Dave, I think the problem people have with your statement "God did not choose not to give your sister CF. She does not have CF because she does not have CFTR mutations. It wasn't god, your sister was just fortunate not to be infected." is this: Many of us (myself included) believe that God DOES have a hand in the afflictions he gives us (whether it be cf, manic depression, or any # of different afflictions whether mental, emotional, or physical). The Bible clearly teaches that He has a masterplan for all of us and for those of us who believe what the Bible says (including that He lovingly created each one of us), we believe that our selves or loved ones have cf for a reason. It may sound "out there" to you but if you study the Bible, you'll find it's not so "out there". You are correct that Kay does not have cf because she does not have two cftr genes, but we believe full well that she does not have two cftr mutations because He chose NOT to give them to her. You do have every right to believe what you want to believe, just as we do. I think that's why Val was upset - you were telling Kay that what she believes is wrong. Kay knows that she doesn't have cf because she doesn't have 2 cftr mutations, she just believes that she was purposefully designed that way by a loving creator who knows better what we need than we do...
NoDayButToday
New member
I've been trying to avoid this thread (since I think it is no longer about what the original poster intended it to be), but I think I finally have to put my two cents in.
For myself (and other CFers I would probably imagine), it is very hard to believe in an all loving God. This doesn't mean I do not believe in Him, nor do I think He is a "bad" God. But if God loves all of us equally, why did He give ME this disease, that will kill me well before my time? If He loves me, why is this His master plan for me? Does He love those he DIDN'T give CF to more? It doesn't seem fair, and it doesn't make sense. I try to believe that there is some positive reason He afflicted me with this, but when I'm on IVs for the 3rd time in 10 months, and am back in the hospital, it's kind of tough to find the positive reason. If you could tell me one, I would really appreciate it. And if you could explain how God could love me and do this to me, that would also be nice.
Also- Dave didn't mention anything about Kay in his postings. I also think he was irrationally attacked when he was called bitter and told to "deal with his issues"
Okay that's my piece. And to the original poster- I think this thread has become about something much bigger than having a second child, so I would disregard what advice people are giving.
For myself (and other CFers I would probably imagine), it is very hard to believe in an all loving God. This doesn't mean I do not believe in Him, nor do I think He is a "bad" God. But if God loves all of us equally, why did He give ME this disease, that will kill me well before my time? If He loves me, why is this His master plan for me? Does He love those he DIDN'T give CF to more? It doesn't seem fair, and it doesn't make sense. I try to believe that there is some positive reason He afflicted me with this, but when I'm on IVs for the 3rd time in 10 months, and am back in the hospital, it's kind of tough to find the positive reason. If you could tell me one, I would really appreciate it. And if you could explain how God could love me and do this to me, that would also be nice.
Also- Dave didn't mention anything about Kay in his postings. I also think he was irrationally attacked when he was called bitter and told to "deal with his issues"
Okay that's my piece. And to the original poster- I think this thread has become about something much bigger than having a second child, so I would disregard what advice people are giving.
Coll,
You seem like a very bright 15 year old. I have never been bitter that I have CF. I have been very fortunate. I was diagnosed late and haven't any serious problems. I bought a house last year and am getting married this weekend, how could I possibly be bitter.
Dave 29 w/cf
You seem like a very bright 15 year old. I have never been bitter that I have CF. I have been very fortunate. I was diagnosed late and haven't any serious problems. I bought a house last year and am getting married this weekend, how could I possibly be bitter.
Dave 29 w/cf
NoDayButToday
New member
Dave,
I think you may have misunderstood my post- I was saying that you weren't bitter and that I felt you were attacked by several people on this thread. Sorry for the misunderstanding and congratulations on your wedding! <img src="i/expressions/face-icon-small-smile.gif" border="0">
I think you may have misunderstood my post- I was saying that you weren't bitter and that I felt you were attacked by several people on this thread. Sorry for the misunderstanding and congratulations on your wedding! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Coll, we all have our trials. For some it's cf, another it's a bad childhood they're trying to escape or an addiction, abusive relationship, financial worries, etc. In 3rd world countries, it's oppression, lack of freedom, hunger like most here in the US can not even imagine, etc, etc. Granted, the pain and suffering of cf are horrible but throughout the ages there have been lots of horrible things that have happened to people (please note, I am <b>not in anyway</b> trying to down play the suffering cf causes at all, just making a point about life in general). Prior to original sin, the world was perfect, there was no pain, no suffering, no hunger, no death. Man chose to presume that he knew better than our creator what our needs are. The result is pain, suffering, and death. God does love us. He created us for a relationship with Him. He wanted us to CHOOSE to love him that's why He gave us free will - the freedom to choose or not choose a relationship with him. But, it's in the darkest hours that we seek Him the most. When everythings well in our lives, we turn away from Him. I don't believe that God creates all of our trials but I do believe that He allows us to go through them so that we'll seek Him and the path of righteousness. (read Genesis and the New Testament, you'll see Paul and the other believers suffered terribly). The thing we have to remember is this life is temporary. It's just a fleeting moment compared to all of eternity... In the next life, the bible tells us you will have a <b>perfect</b> body, a body free from cf, free from pain, with perfect lungs! I realize that not everyone believes as I do, but this is my belief. Also, if you're in doubt about whether there's a creator, read "A Case for Christ" & "A Case for a Creator" by Lee Strobel. He's a former atheist.
Also, for what it's worth, Coll, I thought your post was very well written. You appear to be a very mature, intelligent girl.
Also, for what it's worth, Coll, I thought your post was very well written. You appear to be a very mature, intelligent girl.