Saturday, November 14, 2009

Parents, Would You Roll the Dice on CF?

**I posted this a couple of months ago and got a great response. I thought I'd give it another go around this week. Make sure you take the time to read through the comments too!**

I would really really really like all of your opinions on the following article...

Should Bad Genes Mean No More Kids?

filed under: health

My husband and I chose to have more kids, knowing we have a 25% chance of having another child with cystic fibrosis. Are we selfish?

Maybe, but I think my daughters are pretty grateful to be here.

Homeschool Mom: Is it selfish to have more kids when you know you and your husband have a bad gene and you have already passed it on to two kids? Frankly, I'm not sure. I know I love my kids and I am taking care of their health needs and they are growing and thriving, but I also know that they have a big burden in their lives. I have the burden as well, of course, but it is different when you are the person who is suffering with the physical symptoms. They definitely feel the burden, they deal with it, and they are not happy dealing with it. In fact, I asked each of my children with cystic fibrosis if they could change one thing about their lives, what it would be. Each one said they would want to be free of CF. My husband and I have the same wish. Even the youngest, who does not have it, said her second wish would be that her siblings no longer had CF (her first being that she wants a pony).

Let's face it, having a chronic illness that demands many inhaled breathing treatments, oral drugs, sometimes intravenous drugs, and hospital stays, and which causes you to have pancreatic insufficiency so you have to take pills every time you eat, plus a host of other symptoms and problems that would take up my entire page, is not fun. But does that mean that never having been born would have been better? Well, how can anyone truthfully ever know?

I do know my children are happy and as healthy as their friends. Their condition does not prevent them from doing anything. They do have to work hard to maintain their health, and they have to see many doctors on a regular basis, but for now they are as energetic and exhausting as any other kids. The tragedy would be if their health deteriorates while they are young and they succumb to CF. Obviously that is not something I contemplate too often, because it would be heartbreaking, but when I really consider it, I know that a tragic end does not mean a life was meaningless, it means a tragedy has occurred.

There are no guarantees when you have a child. I remember when I heard about the Christian singer Steven Curtis Chapman, who lost his 5-year-old daughter when his son hit her while backing out of the driveway. Who could foresee such a tragedy? Children get cancer and other illnesses, and sometimes they die horribly and painfully. We do the best we can with our children's difficulties. I think my husband and I are good and loving parents who try to do the very best for our children. I would take my children's illness upon myself if I could. I would give my life for them, but I would never give them up, nor second-guess a decision to have given them life in the first place. The world is a better place because my children are in it, and you should all just count your blessings they are here!

Follow up questions:

What would your decision be?
Would you have more children?
CFers, how would you feel if you knew your parents made that choice?
Any parents out there struggling with this very issue?

I would love your feedback on this issue guys, so please, comment away!!!

43 people had something to say...:

Cara said...

I read this article the other day and some of the responses were just disgusting. I always get mad when I get involved in discussions about this, so I'll sit this one out. :)

Katelyn said...

My parents have told me that they would have had more children had my mother's physical health permitted it, even though I do have CF. Her pregnancy with me was very hard on her and caused many side effects that had no correlation with my having Cystic Fibrosis. They have told me so many times growing up when I would ask if they ever wished I wasn't here that they would not have me any other way - that having CF is just a facet of me, not my entire being.

One interesting thing I have yet to encounter is the issue of patient's of Cystic Fibrosis and their willingness to reproduce if their mate has the recessive gene. I would love to hear or read some articles on it. [Ronnie, if you find anything, please, holler at me so I can read up!]

Dan said...

My wife and I have been dealing with this issue for the last few years. I have been against having more children simply because 25% is too much of a chance for me. I have slowly gotten past that, but it is still a factor. For this and other reasons, we have decided not to try for more children. If God gives us one anyway, well, then so be it. He knows better than we do. But it is our decision.

It has nothing to do with our love for our current children. Samantha (CF) and Timothy (non-CF) are happy(ish), healthy, and thriving. And if we had another child, we would love that child as well.

Maybe I'm unable to explain it. Maybe it makes me weak. But we're done having kids as far as I'm concerned, and it's a decision we have great peace about.

Katey said...

I've given my opinions on this issue mutliple times...and like Cara, get frustrated!

But here would be my decision: Yes, I would have more kids, knowing they would still have a chance of CF.

God has his plans already planned out. And in my opinion, for couples, parents, etc., who choose not to have any more kids so they won't have a child with CF, is going against God's plan. If it is meant for a family, a mom, a dad, etc., to have a child with CF, then let it happen. It is not our job to prevent or stop that from happening. God places that child or person in that family for a reason.

Yea, it stinks having CF. And probably the majority of CFers you ask would wish they could be CF-free. But do I wish I was never born or never had to deal with CF? Absolutely NOT! My mom had a child after me. I know multiple families who had kids after having a CF-child, and I know multiple families/couples who stopped having kinds (at least biologically) because of the fear of having another child with CF. I also know personally a couple who decided not to have children at all, because they are carriers of the CF-gene.

To me, it's like now, couples having the option to choose if they want a boy or girl, if they want their child to have blue eyes or blonde hair. Don't mess with God's plans, his most precious gifts GIVEN/BLESSED to couples (parents)! God chose my parents for a reason to have a CF-child.

LittleM said...

I don't think its a simple answer. I think at the end of the day, you can't predict outcomes with CF anyways (even if you already have a child with cF and the next one will--obviously--have the same exact mutations of genes). I think that there are possibly situations where it might be considerably "worse" of an idea to risk it.. I have CF myself and am considering a child through surrogacy. If my husband carries the gene that puts us at a 50/50 chance with our child, not to mention our child could both have to suffer through the hardships of CF AND have barriers to when his/her mother can be with and care for him/her. Now theres a CF child who is statistically likely to have to LOSE his/her mother at a young age all the while suffering from the same disease. On the flip side, CF research has come a long way and I truly believe babies born today are approaching outcomes not-so-different from their healthy counterparts. So basically, I believe that loving parents who want more kids, and CF children who would gain so much from a sibling... aren't always wrong, or right, but every life is worthwhile, whatever decision is made.

OceanDesert said...

When Mike was tested for the CF gene, the physician we met with told us even if Mike tested + for the gene, there is a process in which they can remove that gene with IVF. So that made me think... IF you have the option to remove that gene, would you? All the issues of 'messing with mother nature' come up, but after I thought about it, I would absolutely pull that gene if I could. Even with all the insight I feel I've gained by having CF, if there is science available to prevent it in our offspring, I would do it. I wouldn't want them to go thru what I have if it wasn't necessary OR have them ask when they're old enough, 'why didn't you remove the gene if you could have?'

Just some thoughts...

Anonymous said...

I started writing my response to this, but then realized I was basically writing a novel! So I think I will leave all the details for a blog entry of my own. So for a shortened response, I will first say that I agree with Cara, I read the responses to the article and was just disgusted by how judgmental and rude people can be! After struggling with this decision after our son was diagnosed in July, I have determined that it is a very personal and very difficult decision for anyone to make and that no one should be judged, no matter what they decide! I am blessed with three wonderful kids and I'm sure people would say that I should be happy with that and stop, but I think having my three kids makes the decision even harder because I know what a blessing my kids are and to think of not being able to have more is tough. We've decided for now to not have any more kids, but it's also something we're going to continue to pray about and see what God has planned for our lives.

sara said...

I think that as long as you can take care of yourself first with no problems and you know what would be ahead of you if your child did have Cystic Fibrosis and you're willing to do it, then go for it. I wish I didn't have Cystic Fibrosis obviously, but it's a semi-controllable disease and I'm glad I was born. There are more good things in my life then there are bad.

Cheryl said...

As a mother of a c.f. child, i think we all have to decide what is best for ourselves. Personally, I would loved to have tried to have more kids, even knowing the risks. But my husband couldn't justify it in his own mind. I think for daddy's its harder in some aspects. A man is the protector, the one who fights to protect his family the danger. C.F. is a danger that a man can't protect his kids from. SO, we decided against more. It took me years to come to terms with being done having children at the age of 22. WAY TO YOUNG! But looking back on it now, 15 years was for the best. I don't think I could have watched another of my babies go through what my daughter did. I didn't have it in me to put another child through it. But to those who have to courage....more power to you.

Cheryl said...

I just asked my daugher with cf what she thinks...and she thinks we should have tried to have more. She also says that, knowing her chances of having a child with cf are so much greater than our, she will still have kids.

CysticGal said...

I think I will take this topic up on my blog, but I thank you for putting the topic out there. As the third child, and the second with CF, my mother was asked this question often- both casually by strangers who came to know we had CF, or doctors, or nurses, or new parents, "So you knew she had CF when you had another baby?!" - as though my mother should be ashamed to want a family. Now that I'm living with CF, almost 30, I can't even fathom my family without ME. I'm no perfect angel, but as a drama teacher I know I've had the opportunity to do some good in this world. It makes me sad to think that other little babies aren't even being born because parents are educated with a lot of fear about CF, and make very difficult decisions without seeing the other side- the good side of raising a child with CF. More on my blog this week . . . Thanks, RSBR!

Rebecca said...

We have two children with CF (aged 7 and 5 yrs) and although our original plan was to have three or four children, when we first got married, our plans had to change.

We left the conception of our second child in God's hands (we simply stopped 'not' trying) and we fell pregnant that same month, so we knew that our son was meant to be here!

But, when he was found to have CF, we knew that we had to face the fact that we couldn't risk having a) any more children with CF, and b) any more children at all. We simply couldn't cope with them.

So I had to face the fact that I was only 23 yrs old, and never able to get pregnant again. Hubby had a vasectomy when our son (our younger child) was 8 1/2 months old.

And although we are very sad about not being able to give our children any more siblings (our daughter in particular would love another sibling), we know we made the right decision, because the children we have are very high maintenance.

Our elder child has CF, CF-related asthma, and joint hypermobility syndrome; and our younger child has CF, CF-related asthma, and Autism with developmental delays, speech delay and learning difficulties.

They require a high level of care on a day to day basis, and their various conditions can work against each other, and there is just no way that we could bring another child into the family. The new child would lose out because we wouldn't have enough time to devote to them, even if they were healthy, and our two current children would lose out because we would have less time to spend on caring for them.

But knowing that doesn't make the broodiness any easier!

Becky xx

Lucy's mom said...

This is such a difficult topic for some folks to talk about. For me, I have no judgment at all. All decisions should be made based on the welfare of the children involved. Each family is different but decisions should be based also on how well a child with CF can be cared for, emotionally and financially!!
I am no longer with Lucy's father so the topic is null and void for me unless I happen to meet up with yet another CF carrier. If that is the case then the option of adoption is ALWAYS okay for me. There are thousands of unwanted children that need loving homes.
I would consider both...adoption AND having more biological children with no guilt at all. My children will always be excessively loved and well cared for, genetic disease or not!! <3

Anonymous said...

no-simply put.

niki36 said...

This was a great article and some great responses. As a CFer, I would never say life isn't worth living because of cystic fibrosis. EVERY LIFE is worth it and although it is difficult, it makes you a very strong person and gives the people around you a different take on life. I don't think it is fair for anyone to have a sick child, but I think it opens up people's eyes and touches a lot of lives when they do..and I think the world needs that perspective.
I face the same issues with having a child myself, although my husband is not a carrier, it means my child will be and the gene will continue on. But does that mean that I should be denied the chance to be a mother? I don't think so. As long as you can love and care for a child, illness or not shouldn't be a factor.

lee said...

My husband and I had already decided on only two or three kids when our second was diagnosed. We opted not to have any more children. BUT, had I gotten pregnant again, (birth control isn't always a guarantee against pregnancy) there was no question of whether or not to have the child. I wouldn't even bother with prenatal testing as there are risks and why bother taking the risk when the outcome wouldn't change anything? I'd still have the baby. This is not an easy thing to deal with and something only each individual or couple can determine for themselves in my opinion.

Kat said...

Wow. What a thought provoking question. We luckily knew we only wanted two children, so when we found out our eldest had CF (at 3) and our younger did not, we did not have to entertain this horribly difficult question. That being said, I am also hard pressed to pass up an opportunity to put in my two cents. :) I am a firm believer that God has a plan for all of us, whether or not it seems like it is the right plan all the time, I take comfort in that knowledge.

In my humble opinion, each person knows their own limits, and that is not for anyone else to judge. Follow your heart and know that your decision is the right one for YOU. It is easy to see your own side of any argument, challenge yourself to see the other side.

Lisa said...

Personally, there is no way that I would think about having another child if I had one with CF. 25% is way too much of a chance for me. I know that there are lots of people that will disagree with me and ultimately it is personal decision, but it is a very easy choice for me. There are many other choices for having children, like IVF with PGD, use donors, or adoption.

The decision to have kids is a very difficult one and one that my husband and I struggle with. He has CF and we worry about bringing a child into that relationship because of his health. There is only a 1% chance that I would be a CF carrier, but I would still insist in additional testing to test for all of the mutations before we went forward, should we decide to have kids. I really want to have children, but it is a very difficult decision to make. So, for now we are undecided.

My husband has especially strong feelings about this issue. As a person with CF, he thinks that it would be selfish for a parents to take that sort of chance.

Elizabeth said...

Not being of an age to have children- I just know my parent's decision, which was NOT to have more children after I was diagnosed with cystic fibrosis, and to take care that no more children were born. Personally, even though I'm far too young to be thinking about it, I will NOT be having children either. The risk of cross infection would be too great, and honestly, I could not justify bringing a life into the world and making it have to go through what I went through/what I'm currently going through. I've seen the look on my parent's face when I'm sick, and I could never face that myself, or make anyone else face it when it's perfectly avoidable.

Jason Addink said...

Hey Ron. Looks like your comments are running strongly in favor of having kids, even with the 25% chance of CF.

Soooo, just to play devil's advocate...

Let's say someone invented a vaccine for something annoying, but fairly harmless... roseola, for instance. But the vaccine also carried a 25% chance of causing CF. (I know that's not medically possible, just a hypothetical.) Would you give it to your newborn? What if there was a 50% chance? 100%?

My guess is that most people wouldn't even consider giving their kid a vaccine for a fairly harmless disease if there was a 25% chance of causing a serious illness instead. Maybe I am off on my guess though.

It's just an analogy... but still. Seems the outcome is the same. In choosing to have another child, you would be taking a 25% chance in creating a child with CF. Or in giving the hypothetical vaccine, the same 25% chance of creating CF.

It's interesting to me that a lot of the comments seem to touch on that having CF doesn't mean you can't be happy, that we should just leave it up to God, that tragedy could happen to anyone, that we love our kids no matter what disease they might have, etc. Which are all true, but seem to me to be incidental to the question.

I'm curious what the motivation is, for those who said they would choose to have kids, even with the 25% chance. Is it the internal drive to have your own biological kids? Is it that 25% isn't a high enough chance? Is it that you think CF isn't that big of a deal? Honestly, I am curious... why take the chance?

solo said...

Well I kinda think of this issue like so. I heard of a prostitute in a nearby city was very expensive. One of her clients was a wealthy businessman. She'd stay over the entire night, persuade her client not to use protection, do the deed, and leave before he woke up. When he awoke, he discovered a handwritten note on his bed stand. The note said, "Welcome to the world of AIDS!" Now this woman got arrested for intent to commit murder. She had a life-threatening illness and with the intention of spreading it.
Now, having a child, if you have CF, is a bit different, as you wish no harm to the child, but if the parents know full well that they can give CF to their offspring, and go ahead anyway; I think they are guilty of criminal negligence.
When your child is of age and in the hospital with breathing tubes and IVs, and asks you why you had them, what are you gonna say? "I had no idea I was a carrier"- That won't cut it in this day and age. "There was only a 25% chance that you'd be sick, so we decided to try our luck." C'mon, I wouldn't wish the trials of CF on my worst enemy.

Lee said...

In answer to Jason. I think your comparing apples and oranges. Your talking about giving a person who is already alive and healthy a vaccine that has a potential to pass on CF to cure a nonfatal condition as opposed to creating an entirely new person, who may or may not have CF.

johncoleman1 said...

having 2 kids one with cf one without and no plans to have more,but if we got pregnant again then of course we would go ahead,i mean there is no way we could imagine our life without PIERCE(the pwcf).Just because you have cf doesnt mean you have nothing to contribute.I know our life would be a much sadder place if we didnt take the chance

Samuel's Mommee said...

The short answer: Yes.

The long answer: This is a tough one. My husband and I have one boy. He has CF. It took us about a year before we even wanted to talk about having more. We've decided to stick to our original plan of having two children. There are two things that can happen: We have a child with CF or we have one without CF.

If we do have a child with CF, then how blessed are we to have experience with that challenge already! They would even have someone to share those unique concerns that having CF can bring.

If we are blessed with another child who does not have CF, then that would be wonderful. We have another advocate.

We have another wrinkle in the plan, though. It's not as easy for me to get pregnant as it is for most people. We've talked about adoption, we've talked about IVF. If we choose either one, I wouldn't "choose" to eliminate those embryos with a CF gene, just like I would choose to eliminate a child with CF waiting for a family. Honestly, I'd probably ask for one with CF.

25% isn't too much for me. I think it's selfish NOT to take the chance. That being said, I wouldn't judge those who decided to limit the size of their family due to the risk of having another with the disease. Each family makes the best decision for themselves.

Anonymous said...

This is so interesting. I personally think it is selfish to continue to have children knowing you and your husband both carry the dreaded CF gene. I may feel this way because I have just had my first baby who was diagnosed at 2 weeks with CF. Neither my husband nor myself had any idea that we were carriers; no CF in either of our families. It was a complete and total shock. Our sweet infant was born on a perfect rainy day in March. Thinking I'd be bringing this bundle of joy home in 3 days. Then on day 2 our world fell apart as she was transferred to the NICU with an intestinal blockage. On day 4 she had emergency surgery, resulting in an ostomy. Come to find out the blockage was a meconium ileus. Watching her suffer and not being able to do a d*** thing about it was the worst pain I have ever experienced in my entire 31 years of life. Our sweet angel stayed in the NICU for a month, then came home with the ostomy. She then had to have another surgery to reverse the ostomy when she was just 3 months old. And this is just the beginning folks. She might be doing okay now, but its inevitable that she will be hospitalized again. I just can't justify bringing another life into this world knowing he/she could possibly suffer the way our sweet angel already has. Maybe I'll feel differently in a few years, maybe I won't. I love my sweet angel more than ANYTHING in this world. And as much as I may want more children, I plan to give all my love and attention to the sweet angel we already have and pray she has a beautiful and healthy life.

Lucy's mom said...

Mr. Devil's Advocate...
We should set aside your vaccine analogy. I see where you were going with it but it just doesn't work.
The over 30 vaccines given to children today DO have risk factors but most parents still willingly give them to their children saying the benefits outweigh the risks and because their doctors and the government told them to. Just as vaccines have risks so do most pregnancies.

Every pregnancy has a risk of genetic diseases (known or unknown) or birth defects...spina bifida, down syndrome, cleft palate, etc.
Should we all stop having children because there may be a risk (even if it is a small risk) to the child? NO ONE wants to willingly 'give' their child a disease or disability but the risk is ALWAYS there.

Everyone always mentions the 25% chance of their child having CF but no one reverses it and says there is a 75% chance their child will NOT have CF...
Some families are willing to take that 3 in 4 chance CF bet.

I truly believe that it is up to the family to decide what is right for them and ones that choose to have more children should not be made to feel guilty for their choices.

Samuel's Mommee said...

Well put, Lucy's Mom.

How can it be selfish to bring another life in the world?

Trixie Bray said...

My husband has CF and we have always wanted to have a child together. I have a child from a previous marriage, but understandably he wants one of his own. Until recently I have not questioned this decision. Currently he is waiting on a lung transplant and has spent all but a week or so of 2009 in the hospital. Unable to work due to the fact that when the call comes for lungs I have to be here with him I have realized that I am neglecting my own child. Leaving him with other family members for weeks at a time to stay with my husband kills me. The hospital is two hours away from home so if something happens to my five year old it would take that long to be by his side, and vice versa. My husband and I have been married for almost three years and have never taken measures to NOT get pregnant. But lately questions have crossed my mind. I see what I am going through with a grown man, and couldn't imagine what mothers of CFers go through. Although the questions arise, I don't think I could crush his dreams of having a child of his own. So, we have decided to put it in God's hands! He will make the right decision.

Jason Addink said...

Guess I am Mr. Devil's Advocate now... ;)

All I was going for with the vaccine analogy was the concept of whether people would willing do something to their healthy children that carried a 25% risk of causing a serious, life-long, life-shortening, illness. If you don't like the vaccine analogy, pretend there are 4 cookies on a plate, one of which would give your child cancer. Would you tell them to just eat one, and take the risk? Or a street you told your kid to cross, with a 1/4 chance that your kid would get hit in the process, and be a paraplegic? Would you tell them to cross the street?

The analogy clarifies it for me like this... in every case (vaccine, cookie, street) you are choosing to perform some action that carries a 1/4 chance of causing serious physical issues with your child's health. Or, you could choose not to perform that action, and your child remains healthy. It would seem to me to be nearly the same choice in knowingly having a child with that same risk of causing CF.

Obviously vaccines do carry a small risk of adverse effects. But not a 1/4 risk. So we judge the benefit to be greater than the risk.

And obviously just having children in general carries all kinds of risks, and horrible things can happen. But the risk is not 1/4. So we judge the risk of having them worth the benefit.

If the risk for CF were 1/1000, this wouldn't really even be a discussion. That is roughly the chances of a 30 year old mother having a baby with Down Syndrome, and most people don't consider that an excessive risk.

Obviously this is a very personal decision, and I am of the general opinion that it should be up to the family. But for me 1/1000 is a risk I would be willing to take (and did) while 1/4 is too high.

Anonymous said...

It's a loaded question. I'm on both sides ;)

Personally, my husband and I had a very difficult time having our first child (I have an irregular cycle). After taking fertility drugs (which have thier own possible side effects) we finally welcomed a beautiful baby girl into the world in 2002. She had myconium aspirtation and spent the first 10 days in the NICU on antibiotics, oxygen and a warmer. It wasn't until our daughter was 2 years old and toilet training that we discovered there was something different about her.

Even knowing that our first child had CF and knowing that any future pregnancy would have a 1/4 chance of resulting in a child with CF did not disuade our desires to have another child. After all, the chance of having a boy or a girl is a 50% chance. Some familis still have all boys or all girls reguardless of the 50% chance on gender. The same can be said of CF carrier families. They can be all CF, some CF, or even no CF at all.

With terrible heart ache we tried month after month to have another child. I was on Clomid (fertility drug) for over a year and still couldn't get pregnant. Finally as a last ditch effort my OBGYN suggested I try Femara (an estrogen drug given to breast cancer patients). Ironically enough my grandmother was on Femara at the same time because she was recovering from a masectomy due to breast cancer. It was a source of great humor for us.

During this time of trying so hard to bring another life into this world (CF or not) my husband was unemployed a couple of different times. While unemployed no insurance company would even consider covering our daughter with CF due to her condition. We couldn't go without insurance and used COBRA for awhile until we were able to get onto Medicaid.

At last we were able to become pregnant again and had our second child with CF in 2007. What a joy she is to us.

Our first daughter with CF was so excited. "Mom, she's just like me!" Our daughters share such a special bond. They are best friends and cry for each others company when they are apart. They will be a strength to each other as they grow older.

With all the things they share it still dumbfounds some people when I tell them that my daughters are not allowed to share a lollipop or a cup of water or any other thing that would cause cross contamination of their mucus.

That said, my husband and I are done having children. If we felt that we could emotionally, phsycially, mentally, financially care for more children responsibly we would (CF or not). We are at our personal maximum right now. We love and cherish our 7 year old and our 23 month old with all our hearts.

We have heard about families who have a child with CF and a child without CF. Sometimes a child without CF will have what is called "survivors syndrom". The "why not me?" "It should have been me!" "why does my sibling get all the extra attention/ food/ candy/ medical care?!?!" "I feel guilty because I dodged the bullet so to speak". Such irrational feelings that are real and can't be denied.

My husband and I have deliberated long and hard about this very question of having more children or not. We ask, "would it be fair to our CF children to have a child without CF?", "would it be fair to a child without CF to have siblings with CF?" "Is adoption an option?" "how much worse will our daughters CF get?" (not will it, but how much). The questions go on and on. The rational goes on and on for both sides of the argument.

In the end, the only people who can make the decision is you and your spouse and hopefully you will let God in on the decision as well.

In these times of economic hardship my husband finds himself once again without employment. I am a homemaker. I shudder at the thought of putting my children in daycare where children who are sick still attend because their parents have no other option. We do the best we can and we leave the rest in the hands of God. After all, we are nothing and have nothing without God . . . .

Anonymous said...

Jason, er, Mr. Devil's Advocate:

I understand what you are trying to get at with you analogy, but it's still off. You say:
" are choosing to perform some action that carries a 1/4 chance of causing serious physical issues with your child's health. Or, you could choose not to perform that action, and your child remains healthy."

This is only half accurate. The 2 choices are:
1. Perform the "action" that carries a 1/4 chance of physical issues.
2. Have no child at all.

For some of us there isn't an option to "not perform the action and your child remains healthy."

Suzanne said...

I read the comments on the article, and I was appalled!!!! Ignorance and stupidity do far more to "pollute the gene pool" than cystic fibrosis. Apparently I am one of the selfish and stupid mothers out there who chose to roll the dice twice after my son was diagnosed with CF at 2 days old after lifesaving surgery from meconium illeas. One of my girls is a carrier, and my baby has CF. We wanted 4 children, but knew that we could not handle more than two with CF, so we stopped at three.

I look at my girls, and can't imagine life without them. If you ask my cysters about life, they will tell you they would rather be here with CF then not here at all. They are amazing children who have already in 6 and 10 short years made an impact on many. They have inspired others to live life to the fullest. I have had numerous people tell me that when they get discouraged, they think about my children, and they are encouraged. They are two of the funniest kids you will ever encounter. We laugh every day at something they say or do.

Yes, their life is difficult, but whose isn't?!?! I believe they have more to offer this world then some of the closed-minded, judgmental people who populate this planet.

Dori said...

I believe this is a very strong topic that many deal with on a daily basis. I will tell you that I will go into more detail about my feelings on my blog (Thanks Ronnie) about why I would or wouldn't at this point. I just think this decision is left up to each couple, their support systems, and their beliefs. I will not tell you it's right or it's wrong because when I first found out I don't know if my answers would be the same as they are now. Read more at

Laura said...

I thought this article was interesting both times that you have posted it. As someone who does not have CF, I can in no way discuss what it is like to live with the disease. I can, however, tell you how much it hurts me every day to watch my boyfriend suffer. Not that he plays the victim role, but boy does he suffer. I would too, with 15% lung function. I watch him struggle with every day tasks like going to the grocery store and taking his dog on a walk. I know that he would rather be here with CF than not be here at all, but i know that he would never want to have a child go through what he has gone through. I understand that things happen, genes go undetected, but I would NEVER knowingly have a child that could have CF. 25% is a HUGE risk.

This issue is not as easy as saying "life is difficult, they will learn to deal with it" Well yes, of course they will learn, because they are forced to. I agree with the responses that say it is selfish to KNOWINGLY (possibly) cause another child to go through this awful disease and most likely die at a young age.

I am a strong proponent of adoption and alternate forms of creating families without the risk. There are so many thousands of children in our world who suffer from diseases and disabilities, like CF, who can't even receive the level of care that patients get here. You really want to add another child to your life, one who may suffer from a debilitating illness, please consider adopting a special needs child

Kerry East said...

My husband and I have decided not to roll the dice. We have 2 beautiful children, our first did not have CF and our 2nd did (that's when we found out we were carriers). Maybe I would feel differently if I only had one child, but 2 is enough for us! If I ever did change my mind about wanting another child, I think I would do the in-vitro route.

Bo said...

My girlfriend has CF and had a double-lung transplant two years ago. Despite the risks - the risk of having children with CF and the risks that pregnancy will have on her body - we plan on having children down the road. I'd prefer to be tested for the CF gene to find out if I'm a carrier, but only so we know the odds. If I get tested and if I carry the gene, we'll go ahead anyway.

Why? Because, as you know, life is about living, not dying. In the last 40 years there have been some major advances in CF research, and I have faith, given the articles I've read, that the advances will continue. Though I don't believe CF will ever be cured - gene therapy is too risky and too, well, Star-Trek - I do believe that advances in medicine and research will allow cystics to live a longer, more 'normal' life.

But even if not, my girlfriend grew up with cf and it's part of why she's an awesome person. The chance to bring a good person into the world is not compromised by the threat of a shortened lifespan.

Additionally, the notion of not having children as a way to 'even out' the gene pool and 'better' the human race is terribly short-sighted. Cancer and epilepsy have been part of the human experience at least since the height of the Roman Empire. Yet here we are, comparatively strong as a species and still kicking it 2000 years later. Darwin will tell you that a species needs to be diverse if it intends to survive. Even though it's a pathology, cf is an example of genetic diversity and, as such, it's possible that nature is attempting a long-term mutation, or at least an experiment, that is meant to help the species in some as-of-yet esoteric way.

CFMama said...

I will make this response short and sweet. I will have more kids, many more, CF or no CF. If God gives them to me, there is a purpose. Enough said.

The Perkins Family said...

I've really been thinking a lot about this since the last time you posted it, mostly because my daughter with CF is 14 months, just about the age that I thought we would start trying for #2. That's on hold for now while we decide what is best for our family. I talked to my dad, who asked me a question that completely changed the way I look at having another child (I hope that it translates well to be written rather than spoken!). He asked me if there was a 75% chance of a future child having CF, would I still be considering having another child. My answer was most likely not. So then why am I not focusing on the 75% chance that a future child will not have CF?
We still haven't made a definite decision but this has certainly changed my outlook on the situation.
I think that each person has to make the best right decision for themselves and their family, free from judgement from others and free from judgement of others. For us, we have never seen ourselves with one child and we would love to give Alison the gift of a sibling but CF is a part of our lives and we have to take this into consideration when planning for future children (although I'm pretty sure we'd stop at 2 just because I doubt that I could handle any more than that!!).

MHughes said...

This is a hard question. I think it's a personal decision for each family. My husband and I are struggling with it. For me it's hard to think that I could knowingly pass CF onto a child. Life with CF is not easy. I feel that I got lucky with how well my son is doing. Do I want to chance it having another one? I don't know. I am open to adoption or in-vitro. I pray that God shows me and my husband the right way because it's not an easy decision.

Jamie said...

I have been dealing with the same issue. I have a 7 month old with cf. I would LOVE to have another child, I think it would be good for my son to have someone to grow up with, who will always have his back! I'm just waiting a little bit just so my son can be a little more self sufficient!

3KidsMom said...

Thanks for posting this, Ronnie!
My husband and I are grappling with this very decision right now. We had our first child together just 3 months ago and had always planned to have another one soon after. Since I have 2 children from a previous marriage who do not have CF, and no one in either of our families have the disease or have a child with it, we had no way of knowing that we would have a child with CF together. It never crossed our minds. But we do.
Now we find ourselves asking the question, "is it worth the risk to have a full-blood sibling for him?", and at this juncture, I can only say we are leaving it in God's hands because it is just not a decision we can make. I hope that He will at some point give us some clarity.
This is a decision I can say I would honestly never wish on anyone. I wish this disease didn't exist and no one had to experience it. Having said that, I feel it is a very personal decision that I feel every family has to work out with God and their spouse.

Anonymous said...

we have two boys who do not have CF and recently had a daughter who does have CF. i was torn about having more but i think i have to stop being selfish right now. our family is wonderful and everyday is a struggle with my daughter (and she is only 8 mths old). i love her and my family too much to risk having another child with CF.

Anonymous said...

i think the notion of leaving it up to God is a cop out. God gave us free will and a conscience. It seems very selfish to bring another child into the world for the happiness of the parents who will suffer. I am mother to a child with CF. I did not intend he have CF but was powerless over it raising its ugly head in my family. I am not powerless in the decision to have another child who will not suffer CF. Children are a blessing or a gift but not a right. People can avail of genetic screening IVF and i cannot for the life of me understand why they would not.