Prospective parents both CF carriers

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grace4u
New Member


Date Joined Jul 2012
Total Posts : 2
   Posted 7/7/2012 10:10 AM (GMT -7)   

My husband and I are both carriers of the DF508 gene. We don't have any children, yet, and are trying to decide if we should go ahead. Our question is for anyone out there with CF or a parent of a child with CF... do you think it would be selfish of us to go ahead and try having children, knowing about the 1/4 chance? Is it fair to them? Do you think they would resent us for knowing and going ahead with it anyway? Or would they be grateful we gave them the chance to live their life and make an impact on the world? We don't want to decide not to have children out of fear and have the world miss out on a beautiful life. We have been agonizing over this for 6 months now. We would greatly appreciate your honest advice.

Thank you!


sarabodwell
New Member


Date Joined Jul 2012
Total Posts : 3
   Posted 7/16/2012 10:02 AM (GMT -7)   
i am a 28 year old with the DF508 mutation. i dont resent having it. it has been a big part in who i am today. i know, being a logical person , that it is no ones fault. CF is nothing more then a mutation in your genetic makeup. information is key to understand CF and what it does. also a strong will power.there are ways to treat CF with medicine and with herbal natural remedies. exercise is difficult at times but physical theropy and and vigilance with whatever corse of treatment that works is always good...and important. the thing you would have to remember is that every CF case will be diffrent. it all depends on the severity of the mutation and the dispostion of the patient. knowlage will only bring happiness and acceptance. and with advancments in the CF field they may even have a way to void the carrier gene before the baby is even born.
one thing i learned to do is be picky about my health care. my doctors are people who i researched and waited for. doctors and nurses and people who dont understand CF very well or not at all will act like its not a big deal but only because the know nothing about it.
at the moment they are doing studies with the DF508 with this drug that can replace at least some of the medications some kids are on. just a pill that does it all i guess. so advancments are being made by the right people.
weather, environment, and work will also be something you have to deal with. for a CF patient to be comfortable you cant live in a place that is too hot or cold and deffinitly not rainy or moldy. harsh weather can affect the condition. positive reenforcment is important. i have alot of it. and i have supportive people who love me. there is no history of it in my family but that is not uncommon. before they really established CF as a condition in the early 80s is was often misdiagnosed as TB or something else that was lung related. ive been able to work but it gets harder each year. really though CF patient shouldnt be doing the kind of work that requires heavy lifting or running around on your feet. office jobs are better or even self-owned buisness. i plan on owning my own buisness soon. these are things some people might not think are important but they go hand in hand with health. i feel better because i take the precautions along side my medications.
i would tell you to have children. just because i have CF dosent make me hate it or my parents for it. in fact i dont know who i would be with out it. and i think it helps me to understand the real human condtion and appreciate life.
i hope this eases your worries some and if you do deside to have children make sure you find the perfect doctor for you. the CF specialist are at the childrens hospitals that are placed all over the country. i was first treated by one in LA, then Boston, and now i have a fantastic one at UCLA in LA. They are the best doctors ive ever had.
Good Luck!

grace4u
New Member


Date Joined Jul 2012
Total Posts : 2
   Posted 7/16/2012 1:54 PM (GMT -7)   
sarabodwell,
Thank you so much for taking the time to respond. :)  I really appreciate everything you have to say.  Your perspective is so valuable.  I am curious what kind of herbal natural remedies can help with cf?  We do live very close to an outstanding Children's Hospital, so that would definately be a plus.  I can see how not all doctors would understand.  I hope all goes well with your business plans! Thank you for all the information!  Bless you!

sarabodwell
New Member


Date Joined Jul 2012
Total Posts : 3
   Posted 7/18/2012 9:26 AM (GMT -7)   
no problem at all and if you have further questions dont be afraid to ask. in this case information is more valuable then gold. and the childrens hospital are the best but always research your doctors and ask alot of questions. i steer clear of doctors who think i dont have full rights to all my medical information. it would be good to brush up on patient rights as well.
there are several books out there about people with CF and how they have advanced there life through all diffrent sorts of treatment. the good thing about CF is its a wide scale of variations and the key is to find what treatment effect that one person positivly. its a trial and error test.
some people do better with antibiotics some work better with herbal natural remedies. but exercise will always be important from light sports to yoga.
and even though you both are carriers there is still a 50% chance you will have non-CF children.
good luck and thank you!

Geneva23
New Member


Date Joined Jul 2012
Total Posts : 2
   Posted 7/24/2012 9:13 AM (GMT -7)   
I'm a 38 year old female with CF508. It's difficult. We had genetic testing done before having children and we knew I was a carrier, my husband was not. We did successfully have 2 beautiful and healthy boys, now 8 & 10. Having them took a real toll on my health though and you should realize that in advance. I would not change my decisions on it for the world, just know it's a different life style.
Good luck to you in any descision you make!

Jacjac
New Member


Date Joined Aug 2012
Total Posts : 3
   Posted 8/6/2012 8:54 PM (GMT -7)   
Gracec4U, i live in Australia, and know that here there is an opportunity to terminate a pregnancy if you detect that your unborn child will have CF- (ie. they can do genetic testing at 12 weeks and see if the baby has inherited a gene from both parents- if so, you can terminate before 20 weeks). I know that some people do not agree with termination on any fronts, but just wanted to let you know that genetic testing of a foetus is possible, if this is something that you and your husband would consider.

Slateskies
New Member


Date Joined Sep 2012
Total Posts : 1
   Posted 9/14/2012 12:28 AM (GMT -7)   
grace4u said...
My husband and I are both carriers of the DF508 gene. We don't have any
children, yet, and are trying to decide if we should go ahead. Our question is
for anyone out there with CF or a parent of a child with CF... do you think it
would be selfish of us to go ahead and try having children, knowing about the
1/4 chance? Is it fair to them? Do you think they would resent us for knowing
and going ahead with it anyway? Or would they be grateful we gave them the
chance to live their life and make an impact on the world? We don't want to
decide not to have children out of fear and have the world miss out on a
beautiful life. We have been agonizing over this for 6 months now. We would
greatly appreciate your honest advice.

Thank you!

Hi grace4u! I'm 28, I have CF, and I registered just to respond to your question.

I have a relatively mild form of CF, and have been fairly lucky in some ways -- I have two devoted parents. But if I ever found out that my parents knew the risk and went ahead anyway, I'd be furious. Life in not inherently worth living, and I'd say that no life is better than a painful life. In fact if I could go back in time and talk to my parents before my conception, I'd tell them to adopt. Or to abort me, if the time machine were a few weeks late.

I hope I'm not just making you feel guilty after having already made a decision, but there it is. I suggest adoption, or Jacjac's suggestion.

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 9/26/2012 4:15 PM (GMT -7)   
Have you looked into PGD? IT's basically IVF but they test the eggs for those with the cf genes and cherry pick out the cf ones. I don't know how you would feel about this, I just wanted to let you know it's a step you could take.
 
Life with CF is tough.Constant medications and treatments, physiotherapy twice daily, nebulisers, inhalors, right  from diagnosis. People with Cf and those around them are always hoping for a cure, and maybe some day it will come, but then what if it doesn't. For now, life expectancy is between 30 and 40 depending where you're looking, when I was born it was 5, I'm 26 now so I beat the odds, and it's got loads better with advancing treatments. But nothing can be guranteed that that life expectancy will ever get any better than 40. I know someone who was around my age and she died at 14. Too many other friends my age have died in their 20's. Some are still going in their 40's. I personally having CF, think going down the PGD route if you really want children, is the best way to avoid all the hurt it causes.
 
Sorry if I've upset you, I just wanted to be honest.
 
Good luck in your decision making,
 
All the best
 
Gem x
Hey, I'm Gem with CF, age 25 and diagnosed at 2 years old. I'm from the UK and say weird things sometimes. I'm no expert but I've lived through a lot of CF stuff.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type thing.

VibratingInside
New Member


Date Joined Oct 2012
Total Posts : 6
   Posted 10/30/2012 3:13 PM (GMT -7)   
Hi, I don't know if you'll get this a month late, and I am not a mom or with CF myself, but I do know how you feel. I am also a carrier of CF, my grandmother lost all 5 of her siblings to the disease, the oldest making it to 16, and my cousin, who is now 22, has the disease. I have known for 10 years that I was a carrier, I got tested at 16 because of our family history. I used to say that I would never marry someone who is a carrier, but when you grow up and fall in love, things change. We have been married for 2 and a half years and still haven't gotten my husband tested. We are very careful not to get pregnant and I could never have an abortion. I am terrified that he is a carrier, and even if the test comes back negative, there is a huge part of me that just wants to do IVF and pre-implantation genetic diagnosis anyway because the test doesn't identify all of the types of CF; and of course over half his family has the arian blonde hair blue eyes so that doesn't help my concerns. But I'd feel so much more comfortable just being SURE that our kids won't have CF. He is much more positive/confident that everything will be fine and both he and my mom think it's totally unnecessary to do PGD if the test comes back negative. I am so afraid to have kids but couldn't imagine not having my own.

I have never wanted to put a child though what I have watched my cousin go though. There have been so many horrible points in her life, she has suffered more than I will ever know, been literally dying several times, and had two liver shunts and a transplant. She is now trying to get a lung and liver transplant, which she has been rejected for by one transplant team. She is in level 5 liver failure, and has been for over a year, things haven't been looking good. But just a few weeks ago she went from 20% to 51% lung capacity!!! She can breath again and her quality of life it much better. We don't know why, but she has been full of miracles like this throughout her life; returned to us from certain death.

She writes the most incredible blog, she it full of faith in God and zeal for life. She writes all the time that she is glad to be here, and that CF has made her who she is today. She's in college, has many amazing friends, has had boyfriends, and although she's constantly battling death, she lives an extremely full life. She is my hero, she is always putting on a brave face, didn't give up when told she wasn't a good canidate for a transplant, just started looking elsewhere, she is a champion! I say that I couldn't put a child though that, but I also couldn't imagine life without my cousin, none of us could.

What I do know, or believe, is that I AM NOT CAPABLE OF BEING THE MOTHER OF A CHILD WITH CF, not in the way my aunt has been. Her life has revolved around my cousin, she hasn't worked until a year ago because all of her time and energy has been devoted to keeping my cousin alive, to spending months at a time staying alone at the Ronald McDonald house across from the hospital in another state that can actually handle my cousin's health. She has had to quit and drop out of countless things at a moments notice to be there 100% for my cousin, knowing the whole time that she could die at any moment. I don't know how my aunt feels, I can't speak for her, but I know that I don't want that for my life and I don't think I could do it. It takes everything she has to support my cousin, she is an incredible person, and I don't think that most of us can measure up. She and my uncle also made the incredible brave decision to have another child, before PGD, knowing that he could have CF and deciding that what was mean to be would be and if he did have CF, that was God's plan for them. Thankfully he is healthy, CF free, and has grown into an amazing young man, clearly from the influence of his sister and parents. He even gave up a full ride at a top school to go to a college closer to home where he would have more opportunities to spend time with his sister; we just never know how long she has left.

I have no answers for myself, let alone you. My brother isn't a carrier, so being recessive you do have OK odds. But I would ask yourself very seriously, could you be a mom of a child with CF? Because if you make that choice, you better be ready to be the best mom on the planet, that's what a kid with CF needs to have a good life.

Best wishes, and whatever you do decide, that is your choice and not for others to judge.
It’s not perfect, but it’s good enough.

cfcarrier
New Member


Date Joined Oct 2014
Total Posts : 1
   Posted 10/25/2014 10:56 AM (GMT -7)   
I know this is an old post but wanted to shed some light to any parents researching with the same situation.
Here is my story

I am 23 years old and my husband is 24. We got pregnant immediately, our first trying cycle. Unfortunately we had a miscarriage at 8 weeks. As if that was not bad enough, I received a phone call from my OBGYN the very next day telling me that both my husband and I were carriers of the cystic fibrosis gene. Our world was torn apart.

After hours and days of researching, I came across information about IVF with PGD but did not want all those extra hormones in me and insurance will not cover it since they consider me fertile since I had a m/c. After researching more I came across a forum in which a person spoke about "Ravgen". This is a company that can do a non invasive procedure, blood test, to see if the fetus has both, one, or none of the genetic mutations. He can find out before a CVS or amniocentisis, which carry risks. He is able to identify the genes using the mother's blood. So now we are in the process and have hope to have answers early and not have a stressful pregnancy. Right now he is offering free to CF carrier patients. It is our best option right now and we are ready to try again because of them. Go ahead and give them a call at 410-715-2111

Wiley Coyote
Regular Member


Date Joined Jan 2015
Total Posts : 37
   Posted 2/12/2015 11:53 AM (GMT -7)   
Hi, I'm 43, with CF (DDf508). I am also a mom of 2 amazing kids, so I have that perspective. I certainly do not blame my parents for me having CF, they had no idea. However, if I were a child in this day and age with CF and my parents KNEW they carried the gene, I would be pretty pissed. So much is published about the miraculous treatments and advances, blah, blah, blah. Let me hit you with some reality for us DDf508's. Its HARD, and all my friends I grew up with, who had CF have all died. The average age of death for this mutation is STILL around around the mid-20's. The overall median age has gone up for "CF in general" a lot due to genetic testing for very mild mutations and diagnosis of very mild mutations of people who were already in the 50's, 60's, and yes even 70's!!!! That really skews the data. Sure kids born now will have a much easier time than I did in the 1970's. The medicines have advanced. But dont fool yourself. I've been told the "miracle cure" has been right around the corner for the past 2 decades. RIGHT. If you MUST have bio kids, genetically screen them first. There is NO shame in not wanted your child to suffer, cuz some day you will have to look them in the eye and say that you could have prevented it. And yes, they will ask. We adopted, and its been amazing. I would never, ever want my child to suffer like I have.
CF DDf508 w/ CFRD (dignosed 3 months) 43 years old, 2 kiddos

mbills2223
Regular Member


Date Joined Apr 2015
Total Posts : 42
   Posted 4/6/2015 10:21 PM (GMT -7)   
My spouse and I are currently in the middle of our first pregnancy, and we just discovered recently that we are both carriers. I can only tell you we've responded. We were obviously very upset and concerned about our unborn son. It sucks to think that about what he has to go through, but at the same time he is my son and he will be perfect all the same. Our very first thought after hearing was "Oh great, we can't have anymore biological children." In just a couple short weeks, however, we've already been considering the possibility of having more biological children in the future.

I guess I say all that to say: You have to do what is best for you. Do what you think is right, and love your kids as much as you can.

joanna2016
New Member


Date Joined Feb 2016
Total Posts : 1
   Posted 2/18/2016 4:27 PM (GMT -7)   
I realize I am late on weighing in on this conversation, but just wanted to thank everyone for their insightful comments. I was interested in knowing if there was an update from any of the parents (or potential parents) who are both carriers? Less than two weeks ago, my water broke at 17-weeks with my first pregnancy. Doctors are not sure what the cause is. Our routine genetic tests came back normal, but I asked for a separate CF carrier test for myself because my sister found out during her pregnancy that she is a carrier. I am a carrier, and I got the call today that my husband is also a carrier. We were looking forward to trying again soon, but this changes our plans. Does anyone out there have experience with preimplantion genetic testing with IVF? Any other options?

nbvet
New Member


Date Joined Apr 2016
Total Posts : 10
   Posted 4/30/2016 8:32 PM (GMT -7)   
Preimplantion genetic testing with IVF is probably the best option and readily available. The hormones are not nice but having the embryo tested before being returned to the uterus is the best option.
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