Fear and hard choices

[Arthur]

Good afternoon, my name is Arthur. I am 37 years old and my wife is 31. We have been married five years. Last year we decided to start our family. In late October, we discovered that my wife was pregnant. In early December she miscarried and we were told that as soon as her normal cycle returned, we could try again. In early January, we found out that my wife was pregnant again. We decided to wait until the end of February to tell our parents - just to make sure everything was going well. The week after we told our parents the happy news, my wife's doctor's office finally called her and told her that one of her tests showed that she was a CF carrier. She was floored. I went in the day we found out and had blood drawn for testing. I can still remember the nurse telling me it was nothing to worry about and that the odds were in our favor. On Monday, we got the news that I am also a CF carrier.

Next Thursday, we go to a specialist to have a comprehensive battery of tests and an ultrasound and to hear about the risks and benefits of amniocentesis. From what I understand, the amnio carries some risk for mother and child, but should tell us definitively whether or not our child will have CF. I know the odds: there is a 25% chance our child will have CF, a 50% chance the child will be a carrier, and a 25% chance that the child will be CF free. And I know these odds exist with each pregnancy. I have gone from knowing next to nothing about CF to reading everything I can get my hands on over the last few days.

Now I am afraid. I don't know what we will do if my wife has the amnio and our baby has CF. The reason I am posting this is that I do not know anyone who has CF. Waiting to talk to the specialist is killing me. I feel helpless. Then, after we schedule the amnio, there will be more waiting and then more waiting on the test results. And by the time we get the results, my wife will be over halfway to term and we will have seen pictures of our baby and heard the beat of his/her heart. I know that you who struggle with this terrible disease every day may have trouble sympathizing with my position; after all, we have a 75% chance of having a healthy baby (although I am told the amnio carries a risk of inducing a miscarriage), but I was hoping someone could tell me a little about what it was like to be a child with CF. I have read some of your posts, and it sounds like kids (who can be mean to the perfectly healthy) are particularly rough on kids with CF. I want to know what your worst days and best days are like. I was an athlete growing up; if my child has CF, can he play sports? My wife and I do a lot of camping; what are the chances our child can spend a long weekend out of doors? And what are the chances that a child born in September of this year will live to see a cure for CF or at least a treatment that abates the symptoms and allows the chance for a normal life expectancy?

I know I should just wait and talk to the doctor in a week, but my mind keeps fixating on the worst. So I am trying to understand what it's been like for you who have CF. A book cannot give me what I need now. Please help me understand what it is like to be a living, loving person fighting CF.

Thank you.

Arthur

 

[Emily65Roses]

Kids are mean. Period. Everyone gets made fun of for something. I personally got picked on for having gas, and making the school bathrooms reeks to high heaven. I've also been picked on for being short, and really thin (but I take that as jealousy <img src="i/expressions/face-icon-small-tongue.gif" border="0">), and for coughing. Now that my lungs have gotten worse, I get picked on more so for the coughing than anything else. That includes but is not limited to, slow walking, coughing long and loud, spitting up nasty green gum, etc.

As far as your child goes... with sports, and camping... there's really nothing anyone here can tell you. Each CFer is SO different, there's no real way to know what your child will go through. Some of us have only GI problems, some have only lung problems, some have mild both, and some have severe both. You never really know. I know that kids can still die of CF in the first few years of life. And there's a case of a CF woman who just died at 70-something. It's such a huge range. Kids who die in their first few years aren't really the average... and living to be 70 certainly isn't common either. The expectancy, as I'm sure you've read, is 32. That's for a reason. About half die earlier, and about half die later, but a lot are in the 30-ish ballpark.

Again, as far as your child living a "normal" life goes, there's not much I can tell you. Except for this: I was born in 1984, and my parents were told I would likely not see my 18th birthday. I'm now 21, and in my 21 years, the expectancy has gone from 18 to 32. That's a pretty big jump. Your child's life expectancy will also likely grow as he/she grows up. Not only that, but your child has the added advantage of time and technology. The first generation CF adults (that's people that are CF adults right now, we seem to be the first group of them) are generally going to die closer to the current average, 32. But your child, being born in 2005 has a much better chance and outlook than say, myself, who was born back in 84, when they still didn't even know specifically which gene caused CF (that was learned in 89). There are also new meds and therapies, etc popping up all the time. Pulmozyme (one nebulized breathing med that I LIVE on) didn't come out until I was about 10. TOBI wasn't out when I was born either. Your child will have these from the get-go, increasing their quality of life exponentially.

So no one can really say for sure what your possible CFer will be like. You can't really know until the child arrives. And even then, you can't tell so much. You kind of have to go with the flow, and see what happens as it happens. But the odds are in your favor, as you said. And then you also have time and technology on your side. So I'd say you're looking pretty good. Do ask more questions if anything I've said brought them forth, or if you just happen to think of some new ones. Feel free to email or IM me personally. I'm always willing to talk about this stuff with anyone who needs it. <img src="i/expressions/rose.gif" border="0">

 

[anonymous]

I am wishing you luck whatever the outcome may be. Im a 17 girl w/cf and was diagnosed when I was 6mths old. Treatment these days keeps getting better and better and so the outlook for your child regarding this is very good. Definately let him play sports! And if I am going to spend like a night away at a friends my doctors say its fine to "take a night off treatment" so I would say camping is not a problem. In saying that though, every person w/cf is different. Your child if they have it may have a very mild kind or they may have a very rough kind.
Anyway, if you've any questions post them and i'll try my best to answer them for you, Shamrock x

 

[anonymous]

On the camping issue, I wouldn't see why you're child couldn't go camping unless at that particular time he/she were too sick. As far as treatments, there are many different good portable nebulizers available so breathing treatments can even be done while camping, in the car, etc. We have a battery powered one that we've used in our car many, many times. We actually bought it for our trip to Disney world a couple years ago. Our kids were 2 and 4 at the time. Doing the treatments in the car even helped with the boredom<img src="i/expressions/face-icon-small-wink.gif" border="0">

Here's a poem I like to share. I found it helpful when my cousin lost her beautiful, healthy baby girl to SIDS a few years ago. I originally saw it posted on another site by a mother who lost her teen-aged daughter to cancer. Life offers no guarantees, even for the supposedly "healthy".

~*~*~*~ Thy Will Be Done ~*~*~*~

"I'll lend you for a little while a child of mine" He said.
"For you to love the while she lives, and mourn for when she's dead.
It may be six or seven years, or twenty two or three,
But will you, till I call her back, take care of her for me?
She'll bring her charms to gladden you, and shall her stay be brief,
You'll have her lovely memories as solace for your grief.
I cannot promise she will stay, since all from earth return.
But there are lessons taught down there I want this child to learn.
I've looked the wide world over in my search for teachers true
And from the throngs that crowd life's lanes I have selected you.
Now will you give her all your love, nor think the labor vain,
Nor hate me when I come to call to take her back again?"

I fancied that I heard them say: "Dear Lord, Thy will be done!
For the joy Thy child shall bring, the risk of grief we'll run.
We'll shelter her with tenderness, we'll love her while we may,
And for the happiness we've known forever grateful stay;
But shall the angels call for her much sooner than we've planned,
We'll brave the bitter grief that comes and try to understand."

by Edgar Guest

 

[anonymous]

Arthur, congratulations on becoming a parent. I can understand your feelings. If you have read posts from the Adult and Family forums you will have a good idea what we, as CF sufferrers have to endure. Both my parents carried the defective gene and sadly I have lost a bro. and sister to CF. I was diagnosed later in life and although recent years have been somewhat more difficult I manage my health well. If you have time you might like to tune into Cystic L, a web sight with Adults who like me are 45+, they tell some wonderful stories of different events in their lives. I enjoy this forum too, and can relate to others who share common problems.
There are [as others have said] many variations of this disease and a good chest specialist would be an ideal person to consult with, if you need to. I have led a great, happy life, grew up on my parents farm, [found boarding school difficult, with my chronic cough, knew I was keeping others awake!!} still play tennis, this keeps me fit. My only child, a dear son is a carrier, his partner is expecting my first grandchild, I share what you are going thru...........I hope and pray they have a healthy babe.
Arthur if you or your wife would like to email me you are welcome to, I live in New Zealand. You have probably noticed we are from all over the globe!! Try not to focus on the worst, it may never happen.
Life is precious and I can't wait for the big day, I am just finishing another pair of booties....
Cheers Eileen
email address: iswag@xtra.co.nz

 

[Emily65Roses]

Eileen,
This is random... but... you said you're making booties for your grandchild? (First of all... that is AWESOME that you're actually going to see your grandkids <img src="i/expressions/face-icon-small-smile.gif" border="0">). Ever thought about selling the booties for some CF foundation, whichever one you might choose? I don't have kids, and won't for several years. But I'd love my kids to wear booties made by another CFer. You may not have the time or money, the idea just came to me when I read your post. <img src="i/expressions/rose.gif" border="0">

 

[anonymous]

Hi Emily, Yes it's truely awesome, thanks. They're tiny purple booties for the grandchild I never expected to have. Babe is due late July and my Mum too is excited about the forthcoming event, {a 4th. generation grandchild}. Your idea of knitting for the CF 'cause' sounds like a great idea, they certainly don't take long to complete and I have ooddles of wool so I'll have set a plan in action!
You are young, I'm sure your time will come!!
Cheers Eileen.
PS:
Purple may seem an odd colour for baby booties but my son's partner loves the colour. I've knitted other other neutral colours too....<img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/wine.gif" border="0">

 

[Diane]

Hi Arthur,
When i was a child with cf, i was a healthy child with cf. I played soccer and tennis in school, and didnt get made fun of in school, until i was 13 and developed breasts....lol. ( Everyone swore i stuffed my bra because i developed quickly over the summer) . I also went to girl scouts, and over night camp, and basically had a good childhood and normal childhood things. I didnt have any "real" lung issues till I was in my early 30's. I was extremely fortunate to have been so healthy ( and i thank God for it), and there is no guarantee that if your child has cf that your child wont do well . I know that the age for a child born with cf today is up in the 40's. We have better treatments today that are better than when i was young and more to come im sure. I can understand your concerns and fears, i would be the same way im sure. If you need to vent you can email me at ................ jinxnick@aol.com I'll help in any way i can <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Arthur.... Hello and Congratulations, I do not have CF but i do have a daughter with CF, she is 9 years old and is pretty healthy, she has been hospitalized 3 times in 9 years. My daughter runs, plays, plays soccer and now is playing baseball, she likes to lift weights with her dad and her favorite things to do are ride her bike and swim. My daughter just jumped roped for the Heart Association and lasted longer than any of the other kids in her classroom. She attends school and church and we go camping with our church for a week every summer, go hiking and do alot of outdoor activities. I would not say that she has a mild case of CF because she has been on antibiotics more than i would like. I had another child after Kait and i did not have the amnio test done because in my situation i was still going to have my baby. I did alot of praying during my pregnancy and don't get me wrong it was on my mind alot but i would not have changed anything, by the way my our second daughter does not have CF and she is not a carrier either. I treat my daughter the same as i do my other children and want her to live a normal life, my daughter is on the thin side but other than her weight she looks very normal. I kinda look at it like this, no one knows what the Lord has planned for us, our children or ourselves and i try to make it the best for her that i possibly can and not treat her like she is different, sometimes i am an overprotective mother when she gets sick but that is what parents do. I will keep you, your wife and your baby in my prayers and just remember everything will work out just fine.

Kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

P.S. also when we go camping we always get a campsite with electric so that Kait can do her vest and nebulizers. and sports are one of the best things anyone especially one with CF can do for themselves.

Kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

Dear Arthur,
i am 30 years old and my borther has lived with cf for his 25 years on this planet. He has suffered his entire life. I dont have kids but my sister did amnio with her daughter. We neither want to have any kids with it. He has had a double lung transplant and trach feeding tube nuremous operations. It no life to lead for anyone. If u have any type of compassion for life i wouldnt bring no child into the world with that disease.

 

[anonymous]

WOW that last response was real compassionate... ANYWAY i do not believe that is anyway to look at life, so OK maybe we wont have CF but who knows down the road if our children will maybe have cancer or any other kind of disease or maybe they will be run over by a drunk driver or maybe they will even comitt suicide... I think that everyone should enjoy life to the fullest no matter what cards you are dealt and not focus on all of the negatives... Arthur having children can sometimes be worrisome with CF or without .... Just love your child and enjoy them and let them enjoy you and enjoy life together, please do not focus on the negatives .... we never know what the future holds......

 

[AngieM]

Hi. In response to the last response.... you're right who knows what the future may bring. I was at a funeral last year for a 13 yr old who died from streptocarcal (sp?) pnemonia. A heathy 13 yr old.! My mother died at 52 w/ cancer (diagnosed 1mth) & there are Cfers older than that.

I have a 10 yr old step daughter who has Cf. She's been in my life for 4 years. She has always seemed like a normal kid to me. She plays basketball, soccer and softball. Very energetic. She does all the things "normal" kids do except that she has to do treatments ( The Vest and nebulizers) and pills everyday. Will things get worse down the road?? I don't know. But I've often looked at others with diseases and thought " it could be way worse".

We are going on a cruise this June for 7 days. If we don't bring the vest then we can do hand treatments.

Let us know how everything is going for you and your wife.

Angie (stepmom to 10 yr old w/ cf/cfrd)

 

[WinAce]

As a person with relatively severe lung illness from CF...

I agree with the poster who said it's no kind of life to lead. Whatever a person with CF will enjoy, even if he'd say life was all worth it in the end, will be tinged with the knowledge that it would have been so much better without it. Almost anyone with CF is destined to face so much crap in childhood and (if they live further) beyond that it ain't pretty. Would you be comfortable seeing your 9-year old cry, not understanding why the nurses have to stick a needle in his arm for the ninth time in a day (one for each year)? Could you easily explain, when they were 19, that they statistically had a year or two to live without a transplant, when their friends were out making college plans? Would you mind making a child who's gonna get cancer in 20 years, on the off-chance that a cure for it will be available by then?

CF, as currently known, destroys people's quality of life. The healthiest with it would enjoy life *far* more without it, and the miscellaneous issues it introduces in everything from relationships to holding down a good job. And the sickest with it... well

Sure, a person can die randomly for no good reason. But good parents acknowledge that they owe their children every possible advantage, and will take every step imaginable to ensure they don't handicap them from the get-go.

I sincerely wish you a healthy test result. If not, personally, if I was in your shoes, I'd consider abortion the lesser of two evils.

 

[Emily65Roses]

And there are a lot of people that would disagree with you. CF sucks, but it's not all there is and it's not the end of everything. Mind you, I'm not in peachy keen condition either, so don't use the severe lung disease against me. I'm certainly on my way down. But I'd rather be born again than not, if I had the choice.

 

[anonymous]

Life is a gamble. In today's world we are given options, right or wrong. I have CF and am getting married, yes my fiance will be tested to see if he's a carrier - and I hope to God he is not. But if a pregnancy occured by accident, I wouldn't knownly get pregnant if he was a carrier, with that knowledge I couldn't, but finding myself pregnant I would still have the baby, my chances would be 50/50, but because I believe in God and that he has a reason, I would have this child. It all depends on a persons religion and state of mind. No this disease is not always easy but the love and devotion of a parent and helping that child have a positive rather than negative outlook on life goes a long way in taking care of oneself and believing in the future.

I truely believe children born today with CF have a far greater chance of living a somwhat normal life and that more treatments will come along to not only extend lives but improve the quality of life. I know there are some negative responses on here, but if you look the majority are positive, no we don't like having CF, but I agree with Emily who said she rather be born again than not. For even though there are rough times life has great opportunities. I have flown to Hawaii, Alaska, and Las Vegas with all my equipment. I have taken road trips and stopped along the way at rest stops and fire stations to do therapy. I went to college, lived in the dorm, and am now getting married. My lung function is down, and I don't feel the best, but I will not let this disease take away all the dreams I have. Without dreams there is no reason to enjoy this life. We may need to modify them a bit but we don't have to completely give up on the many brilliant beautiful things life has to offer. Have faith, I will pray of all of you. This baby is a gift, she or he may not be perfect, but none of us are. And just take a genetics class you will see that in the scheme of life there are so many more awful things that a child could be born with.

Sarah (IdaJune)
27 w/cf

 

[2sickkids]

I just have to ask the person that posted at 10:47pm yesterday. Wow could you say something like that? Did you not love you brother just as much as you would have if he had been healthy? No one should ever say someones life is no life to lead. Every person that ever graces the world with even one breath makes some kind of inpact on at least one person and in my opinion that makes life worth living. Life is not supposed to be easy. I have two sons with cf and trust me everything I do for them is with compassion. I was told over and over during my 2nd pregnancy to not have my baby because he could have cf. I refused to have an amnio.The doctors thought I might die and were worries about my delivery. I told them not to worry about me but they better save my baby. Death can happen any time any where and for any reason. Being born as a part of life brings you one breath closer to death. In that last 2 years three of my best friends have died all in their 20's and all healthy my aunt died of cancer. I wonder I've never been healthy I couldn't run and play with other kids because of my lungs and heart does that mean I shouldn't have been born does that make me less of a person? I think not and believe me growing up my health was the very least of my problems.

 

[anonymous]

Hi,
I know what your going through. This is my second time being pregnant and knowing the posibility of having a child with CF makes this a very difficult time. I had my amnio done on 3/22 and I'm still waiting the results. My husband and I are both carriers, he has a child from previous marriage with CF. We have a daughter together that is a carrier but not effected with CF. I had an amnio with her at 20 weeks and my last amnio on 3/22 I was 16 weeks. The chances of having a complication with amnio is very small, and for me the benefits far outweighed the risk, but its a personal decision you and your wife will have to make. I will not terminate if the baby has CF but I will be more prepared.
My step-son does everything a child without cf does. He stays with us every summer but primarily lives in NM. He is 11 and I have an 11 yo from a previous marriage as well. The two of them are best friends. The one with CF is actually more enthusiastic than my son, and my son will sit in front of a game cube or x box all year until his brother comes to town, then they hit the streets of our neighborhood and we barely see them till the sun goes down. We go camping, to the beach, fun parks, we do everything a normal familiy does, we just have to remember to do his treatments and of course bring his pills. No one who doesn't know us is aware he has CF and you would not know unless told. unfortunately, he was hospitalized yesterday for a two week "tune-up" as they call it around here ( I just learned that). He was hospitalized this same time last year but seems to be doing great inbetween. The medical field has come along way with CF and its getting better and better all the time. You sound like your going to be a great father, this child sick or healthy is lucky to have you.
Oh, I'd like to mention, the worst part about the amnio is by far the WAIT! Its absolute pure TORTURE! Everytime the phone rings my heart skips a beat, I keep waiting for the call that will reveal my babies fate.
Jennifer

 

[anonymous]

<i>Dear Arthur,</i>
Yes, congrats on becoming a dad. As you can see by the above posts, people are divided on this topic. I know each is allowed to have their own opinion, and here is mine....

I am a 27 year old female with CF. I have had my ups and downs and bumps in the road. I would not change my life for a second. I know that may sound strange, but if I were to have a choice of being born with or without CF, I'd really have to think about it. I love the person I am and that is largly in part to having CF. I live life to the fullest and enjoy the little things that most other people take for granted. IF your child does have CF and you keep it (as I personally would hope you do), just do your best. That is all you can do. CF will make your life so different in bad and GOOD ways. It will teach you compassion and love, you will see the resilence your child has with in, you will see other children in the hospitals that make you feel so lucky that your child has CF and not something worse. You will look death in the face and fight with every fiber of you to save your childs life and defy death. You will amaze even yourself, this is a promise. This is not meant to hype you up to think CF is a cake walk, because it's not. But you must also realize that CF is not a death sentence either.
Best of luck to you and your wife, Arthur!
Sincerely,
Kelli

 

[Emily65Roses]

I just want to agree with what Kelli said. She said she wasn't sure. But I am. If I had the opportunity to be born again without CF, I wouldn't take it. For all the reasons she said. I know it sounds weird, but I've heard that quite a few of us actually feel this way.