Hello.Just found out that our second child(only 5 months in the pregnancy) has 2 of the genes. I have one of the common forms and my wife has some wierd form. Basically the verdict is the disease even though they want the final decree to come from the guy doing the test...My wife had a sister that died shortly after birth and my family has no known history of the disease.I am reading what I can but this is a really shitty(sorry) disease to have. It does not seem like a normal life with the spector of death around every day.Why have the child?I really don't know at this point.....
Why have the child?
- Thread starter anonymous
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I know it is probably hard to face. But, it's a child from God and your child will have a smile that will make your day and alsohave alot to face in life, but love and help will be fine. My daughter was a very shy girl and met a boy who has this disease.He helped her to come out of her shell. He helped her along the way even though he has so many obstacles to overcome every day of his life. Your child is her for a reason, let it happen.
My mother-in-law's first child died before the age of 3 with CF. She then had two healthy children, then my husband was born. (At this time they were just beginning to learn CF was hereditary.) There is no doubt in my mind that if she was pregnant today she would be counseled to consider abortion. My husband was diagnosed with CF at birth, had surgery before he was a day old and then again at 6 weeks. Each time the drs gave them NO HOPE. After he survived the second surgery, they told them he would not live past five. He just celebrated his 44th birthday. This June we will celebrate our 23rd wedding anniversary. Our son is in the eighth grade. My husband is a pastor, and is uniquely gifted to help people facing any crisis in their life, especially illness or death. Let me tell you, if you asked me, his family, our loved ones, or even the hundreds he has helped, they would tell you that every life is a gift from God, is valuable, precious, rewarding and worth living -- and in my husband's case, inspiring. There will be hard times, but usually things that are valuable are worth the effort. God has given you a precious gift, I pray you will have the strength, courage and wonder to appreciate it. I also pray you will have a group to offer their support - your family, your church, a CF chapter. I hope this brings you and your wife closer, and that you know more than most how precious each day truly is.Take care.
I'm not going to lie, living with CF is difficult. But you play the hand that God deals you...what's the alternative? Life in general is difficult. You gain perspective from having to face obstacles that life put's in your way, CF or no CF. Many folks may never know what it feels like to have CF and some of the addtional challenges one may face , but you'll never find me crying in my beer about breaking a fingernail 
-homer
-homerLife is the gift. The smile on the face of your child is the gift. The sweet word and silly things that they do and say are the gift. My child's life is worth more than 40 K a year in meds. Her life is worth the world to me.The original author asks "Why have this chld?"I ask " Why kill it? because it is not perfect?" Sorry to burst your bubble but none of us are perfect.Yeah this disease can be crappy, but my daughter leads a pretty normal life. She goes to school with other kids her own age, she takes dance classes and she is very funny. She is a social butterfly with many friends and admirers. People are impressed with the way she speaks to adults without fear. Yes she has to take meds and do chest physiothreapy. Yes she has a g-tube. but truthfully, they are not the focus of her life, just small things that she has to do to stay healthy. What is "normal" anyway? some "normal" kids have adhd, they have to wear glasses or they have to shuttle back and forth between divorced parents. We define what normal is for ourselves. AndreaMom of Rachel, 5 with CF and one on the waycheck out our family site to find out more about our experiences with CF http://groups.msn.com/TeamRachelJane
well, you can always look at it this way.... When a child is born with an illness everyone is quick to wonder what the life expectancy will be of that child. My very first boyfriend was perfectly healthy, we were young and in love and i was heartbroken when we broke up. 3 years later, his brother( perfectly healthy) was killed in a motorcycle accident. Then 6 or so years later, i read in the local newspaper, that my very first boyfriend himself was killed. I am sure when their parents had them, they had no idea any of these things was going to happen. Noone knows how long a person will live. Perfectly healthy people die all the time, for many differerent reasons. There is no race in life to see whos child is the healthiest, or lives the longest , easiest life. We deal with what we are dealt.
Our daughter was diagnosed at 2 months old. She has touched and affected the lives of many in very positive ways. I understand that the thought of a child with CF is difficult, because I have been there, but I cannot imagine life without her. Things are difficult at times, but imagine they are for parents of healthy children as well. Our daughter is 3 1/2 now and doing great. CF kids are very normal, just not as healthy. They go to school, have friends, and do everything a healthy child would do. There are worse things in life, and as much as I wish my daughter was not 'sick' it is part of who she is and I would not change that for the world. Why have this child? Because it is a child that will bring you as much joy as any other child. To say that you would not have this child is to say that my childs life is meaningless. I think you need to ask yourself why you wanted a child to begin with. Will you only accept a child that is perfect? I don't believe such a child exists. I want you to imagine your life now without your first born, and think of all the things you would have missed. A CF child is no different. Their needs are different but the love is the same. I wish you and your family all the best in whatever decision you make. This is a good place to go if you are looking for someone to talk to.Here is a poem once posted by someone else on this site, which I hope will help you:Welcome to Holland - by Emily Pearl KingsleyI am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...When you're going to have a baby, it's like planninga fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. Michelangelo's David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around..., and you begin to notice that Holland has windmills..., and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away..., because the loss of that dream is a very, very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland
First of all, what a beautiful way of looking at it!I have CF and am 28 now. Having CF can be a bit of a struggle, but I know that I am so much of a better person with so much more compassion and understanding of others because of it. When I was born in 1975, CF was not understood and I ws expected to die after my first operation at 2 days, but alas I am better than ever and fitter than most other people I know at my age. I look after myself a bit better and enjoy and appreciate every day more than the average. And how much closer are we to a cure now??!! If my parents had had the choice of abortion I would not begrudge them the choice, but I know the world is so much more because people are not uniform and we are indeed ALL different. Isn't it better than giving birth to a murderer? None of us know what we are getting when we give birth, and many diseases, such as cancer, are being linked to genetics now.It's all your choice, and I say bugger the church, but your decision rests on whether you realise that CF isn't the end of the world. It's just a detour in the journey of life.Bit deep, but it's a big decision, as I am sure you realise.
My husband and I also found out our unborn son (I'm 6 months now) has CF. We also struggled with the decision to terminate the pregnancy or keep the baby. I did as much research about it as I could talked with many CF Dr.'s and prayed a lot. In the end I couldn't bring myself to end his life. My husband and I still struggle with the diagnosis, but after talking with these people with CF I realize there are much worse dieases out there. I can't offer you advice, but I can offer you support - it's the hardest decision you'll ever make. Don't let anyone make you feel guilty because noone can have an opinion until they've walked in our shoes. It's awful and I can honestly say I know exactly how you feel.Best of luck to you.Deb
serendipity730
New member
To Who Began This Thread: You won't get many people here who don't think it is worthwhile having this child. We all have CF, and yes, it has wrecked havoc on our lives. However, those lives are still worth living. I guess I am one of the lucky ones, but I am fortunate enough to have a loving family, boyfriend, and will soon be completing college. Just because a life isn't perfect doesn't mean it isn't valuable. I am sure that your child would bring something wonderful to you and your wife's life. As to the previous history of the disease, one can't even compare how CF was when your wife was a little girl to now. But if you feel that this child will only be a burden and resent it, by all means, abort; it is difficult enough having CF, I wouldn't want parents who didn't want me. ~ Mary 21 w/CF
Hi- Sorry you had to face such shocking news, but let me tell you our story. My daughter was diagnosed at 4 months of age. Though terribly sick and malnoursished at that point, she responded immediately to the enzymes and quickly turned into a robust little girl. She is now 19 years old, attends one of the top universities in the country, has become an accomplished dancer and leads a normal life. She takes a lot of medication- I cannot lie- and uses a vest for respiratory therapy 30 minutes each day. We worry when she gets a bad cold, but have found that antibiotics and good old fashioned sudafed usually get her through in a reasonable amount of time. For us, it is not like death is lurking around every corner--you do have to be vigilant about finding superb medical advice, even if it means being a little obnoxious and aggressive, but oh the rewards! Since you already know your child has CF, your child will be treated from the very first minute of life and will most certainly benefit from that. The worst part for us was that no one knew what was wrong for months and so nothing we did was of any help at all. No one can tell you what to do and please do not feel guilty about any of your feelings-- I can only tell you that your life might not be the nightmare you are picturing. Our daughter has never even been hospitalized and never needed IV antiobiotics. I often say that had I known that she was going to have the life she has, I could have saved A LOT of worrying. Good luck. I hope this helps.
My daughter was also diagnosed at 4 months of age. She had been sick for months before her diagnosis and spent weeks in the hospital. She is now seen by a great CF doctor and is doing great. I can't imagine my life without her. Like the other parents out there, I can't lie, she at times is on quite a few medications, but "normal" day to day life for her is just that, normal. She is on respiratory treatments twice a day, which last about an hour each, but other than enzymes the only CF oral medication that she takes is her vitamins. Luckily, my husband and I have great insurance so the big expenses are covered. I don't know your situation, but many states have programs that will cover health care coverage for CF. We were devastated when we found out, not knowing anything about the disease, we envisioned burying our daughter before she was five years old. Needless to say, we quickly learned otherwise. She is now 16 months old and doing great. We've talked to her doctors about pregnancies and if we should have another child. She told us that she sees no reason that our daughter won't live a long normal life and doesn't see CF as a disservice to a child. There is so much that they are doing with this disease. Will we have another child? That's a big decision. Would I end a life that was already there? I don't know what I would have done had we found out during our pregnancy. Using hindsight, I say no way! Our daughter is the light of our lives, she brings joy and happiness to everybody around her. CF is a terrible disease, but you really do stop seeing death at every corner you turn. You won't go through life wondering if it's your childs last day. You will get past that. What you end up seeing is that precious smile and a person you love beyond belief.
I
IG
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Tough decision to make, in the end it is up to you and your wife. The question is, how do you ever know what kind of life this child is going to have? Is it going to have an impossibly tough life, or will it have virtually no problems, it is not something you can give a strait answer too. Although every CFer has the gene, each case is different. Some have realitively no symptoms, some have mild syptoms (like me), or some have a really harsh time of it. I'm not one to pass judgement, but thought I'd pass the thought along... you have to ask yourself this question, will you be able to live with yourselves if you do decide to terminate it? The never knowing if it could have made it, if you hadn't terminated it? But in some cases, if the child has severe CF, maybe it would be better to terminate the pregnancy? These are only my thoughts on the subject. Even though I have CF and as you put it "with the spector of death around every day" I have a realitively normal life although it has had it's hard points it has made me a better person for all that I have been through.~Candice
This is a short note which i feel is a positive one. When I was born and diagnosed at 6 weeks old with CF my parents were told not to plan a life for me and i would be lucky to reach the age of 7............well I am now 37 (OK i am not in the best of health) but I have gone on to live a 'normal' life and I have a 16 year old non CF son of my own now.I am glad my parents had me and that i have proven the medical profession wrong. You can live a normal life although it is kinda tough at times.I hope you make the right decision for you whether it be to go along with the birth of the child or decide to terminate. It is a hard decision to make so I wish you the best of luck. CF does suck but there are different degrees of CF too.Take careRose MarieFemale with CF aged 37 and live in Scotland
To the first person who posted-CF is a difficult disease, but it is true that despite these difficulties, people with CF maintain very normal lives. We are lucky in that there is pretty much no physical evidence of CF, other than the fact that it is difficult to keep weight on (for some of us), and when treatments are not taking place, most people with CF can and do live extremely normal lives. However, I think that this point is not the most important one, but instead it is more relevent to consider the type of people that CF-ers become as a result of the difficulties of thier disease. On this website I have only encountered individuals who are well adjusted, smart, happy, and deeply appreciative people. They all have a wonderful perspective one life, and I can bet that most of them developed that perspective at a young age. As Homer said before, you will never see him crying in his beer over a broken fingernail. This is so true: so many of the "typical" things that plague teenagers never really bothered me in the way they bothered some of my freinds- and I have always been able to realize that life is not ever really that bad, and nothing is really out of reach. I feel it is necessary to emphasize that I know I would not be the person I am today if I didnt have CF, and my attitude on life might not have ever been what it is now if I had not had CF. The same goes for my parents, and even my mother has often wondered how our little family might have been different if I hadnt been sick. Would be have gotten caught up the superficialities of life the way so many families do without even ever realizing it? It is often the people who have struggled most that have the most charismatic personalities, and who influence so many people. It is those who have perfect lives and nothing goes wrong that often end up being complete bores! So WHY on EARTH would you want to abort such a person. Plus, the things you listed arent as monumental as you may think. If you have good insurance, you should be fine, and as far as "equipment" goes, theres only the VEST, which insurance covers in almost all cases, and then pretty much just nebulizers maybe, (which I dont even use), and even kids with asthma use those and they cost barely anything. I can tell you one thing, I would never trade places with almost anyone I know, and none of them have CF. I like myself and my life much better, because I dont make big deals out of spilt milk, I dont worry about everything, I dont hate life, and I dont complain.
You sound, understandably, angry and resentful. Are YOU going to see the spectre of death every day, or are you concerned that your child will "see" it? My parents were very anxious about my CF when I was growing up, and though they never showed any resentment of my condition, I certainly knew that they thought about my death a lot. They raised me, therefore, to feel fragile and scared of my CF; to see death around every corner; to fear every illness and exacerbation. I am 39 and still struggling with this sad legacy. This was a profound mistake in how they chose to raise me, I believe, but I guess they could do no better. So - Do NOT have this child if you cannot raise it to be brave, fearless, and accepting of life and health. Do NOT have this child if you will be scared of death its whole life - because it will pick up on your fear and grow into a fearful person, too. Do NOT have this child if your beliefs about the 'weirdness' of CF will be evident to your child (and believe me, they will be evident). Do NOT have this child if you cannot see it as equal to your other child, no better and no worse (I should also say that my sister, who does not have CF, suffered greatly from lack of attention as my parents lavished their care on me, their "sickly" one, leaving my sister to "tough it out" on her own. I was the focus of their concerns, and my CF became the focus of our entire household. Another mistake.....).<img src="i/expressions/face-icon-small-sad.gif" border="0">
I am the mother of a 8 month old boy with CF.I have to say that I wouldn't change anything at all, he is the most precious thing to my partner and I.I have learn't that CF isn't the end of the world if you don't make it.I was very upset about the death issue for quite a while after he was born, but soon realized that many of the issues faced by people with CF currently especially the adults maynot be the case for your child or mine.The rate of research and improvements in treatments is remarkable.You have to take each day at a time and enjoy them, I have realized that I cannot think about death every day because I don't know what the future holds, and the same goes for any other parent with a child that doesn't have CF as well.NO ONE knows what the future will hold for them and we can't live our lives worrying about it or we would never enjoy anything.I would be doing my son a injustice putting such limitations on him as well!Anyway, he is healthy and bubbly, he is the tallest and chubbiest baby in our coffee group (NZ) and thanks to good early treatments and enzymes right from the start we have had a good few months.No One can tell you whether you should continue on with the pregnancy, but I can tell you that from my perspective I wouldn't change anything even if I had a second chance.Good luck and feel free to email me at any stage if you have any questions!mrlambert@clear.net.nzRebekah Lambert - New Zealand mum.