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Unborn Child
- Thread starter anonymous
- Start date
I would just know that even if your child does have cf, that he or she will grow up and have a pretty normal life, and you will get though it. Our daughter has two 508 genes and is 2 and a half. She has not been sick because of cf. I don't know what the future holds for Maya, but she makes every day precious. Life has a new perspective, and I just cherish her and don't take people for granted. Having a baby is a great thing, even if there are challenges. Email me at jenirein@yahoo.com if you want to chat.Jen
i'm 21, female, with CF and have double DeltaF508 - my parents each have one. so basically i have the same mutations your baby will have if she/he will have CF.a very good thing is that if your baby has CF, then from day one she/he will be treated exactly for what the problem is - no need to try out meds, to guess what's wrong and to not have the baby treated correctly because you don't know what is it exactly. there are a lot of great medications and treatments out there today which ensure that somebody with CF can not only be alive and well but also have a good quality of life - go to school, spend time with friends, do activities, date and get married, have a career and have a family, etc.
I also have 2 delta F508 mutations. I am 30 and still doing very well. My lung function is still at 72%...this past November was the first time in 7 yrs that I have been hospitalized for a lung problem. I have other problems related to the CF...such as diabetes, arthritis, sinus, and also have thyroid probs because of it..which is a new one for docs. I am married ...have a beautiful almost 6 yr old daughter and am working full time as an office manager. I feel that I have lived a normal life. I also feel that I am a very strong person because of the CF...I was diagnosed at just a few weeks old....so I have known all my life. I pray that your baby is not born with CF...however if she/he is......will be a wonderful and strong child! Take Care and God Bless!Dea
farmfamily
New member
We have two children with the Delta f 508 mutations they are 11 and 7. One child 15 that is healthy. Life is rough at times. But I don't regret having any of my children they are truly each a blessing. All in all we lead a fairly normal life it's just more complicated. Mom
My son was diagnosed prenatally..My husband is a carrier of deltaF508 and I have a rare mutation W1282x..The only advantage of being diagnosed prenatally was that we were totally prepared..We read up on all the treatments and medications. It was really hard when we found out but with the support of each other, family and friends, we got through it..The worst was waiting for the results. My son just turned 5 and is a very active little boy. We started on treatments and medications in the very beginning and he thinks its part of a normal routine.. We just had another baby who doesn't have cf. Good luck and try to stay positive...You will have a beautiful baby.
Thanks for all your responses- I have done a lot of research on this disease and am comfortable either way it turns out. We were really scared at first until we did do the research. I also think it is a blessing that we know prior too Kaylee being born so we are prepared and she can start meds as soon as possible if needed.Thanks again and good luck to all- Will be in touch-Adam
My husband and I found out our unborn baby has CF also. I can tell you as prepared as I "thought" I was for a positive diagnosis - when the news came I was completely devastated. Be careful what you read on the internet. Talk with people - that has helped us tremendously. Find families with CF children and ask them all kinds of questions. All the ones I've found have been more than willing to talk to me. Also, don't feel guilty for your feelings. We went through a range of emotions from sadness to anger. It's completely normal (so I've been told) because you need to mourn the loss of a healthy child. We will say a prayer for you - take care!
Unfortunately, we just found out that we do have a child with CF! You are absolutely right, as much as you prepare yourself for that news you can never be ready! I am going through the range of motions of being sad and angry. We had decided regardless we would take it to full term and I am glad we are doing that. We lost a baby last year @ 21 weeks and my wife had to go through full labor. We decided that we would rather be able to physically hold, touch, and love this child as long as we could.There is a plan for her and we will cherish every moment we possibly can! We know its a girl and have named her Kaylee- We are due in June and I know I will be as excited as I have ever been having my first child but I guess always knowing in the back of my mind how long she will be with us.Im already thinking like a dad (I didnt have one growing up) and want to be able to do all the things that dads do with their daughters. Does anyone know where there are other sites to gain more conversations? This site doesnt seem to get much attention? Does anyone know of fundraisers that go on for CF? I hear things on the radio for cancer and other diseases, but never CF. I would interested in actively pursuing an opportunity to help.ThanksAdam
I'm sorry to hear about your diagnosis, but welcome you to our exclusive club of prenatally-diagnosed children with CF. Our daughter was diagnosed in utero just over four years ago and after consulting with local CF specialists and visiting a 10-year old girl with CF in the hospital, we went ahead and had her because we already loved her, and had learned that kids with CF still have the full capacity to experience joy, despite their challenges. She has her rough spells, but she's a vibrant, engaged, bright little light and I wouldn't trade her for anything. You may be in shock, which makes perfect sense. Educate yourselves as much as possible, though it may seem overwhelming! A good website is www.cfri.org (with a very cute and "oddly familiar" poster child on its home page), and the CF Foundation website has some good links. Feel free to email me at keaiwen@earthlink.net. We could even talk on the phone. I find great comfort in talking to other parents in similar situations.
Hi - Sorry to hear about the dx. Some other good sites to check out are CFParents in Yahoo groups(very active) and Cystic Fibrosis 2 Chat. There are many fundraisers through the Cystic Fibrosis Foundation. you can go to their web site - CFF.org to find the closes chapter and also the CF clinics that would be close to you. This is most likely where your daughter will be followed by a CF team - a pulmonologist, a dietician, a physical therapist, resp. therapist, and a social worker. You don't always need all of them, but it is nice to know they are available and keeping you informed of all the latest info. I have a 6 year old son who was dx. at 1 1/2. It is a learning experience. My son, as well as many others I know that have CF are blessed with amazing personalities. He lives life in a big way and can light up a room with his personality. We emphasize the positives and deal with the other stuff. It becomes a way of life and the person is a person not the CF. When Jason was first Dx., the CFF gave us some local contacts of parents who had gone through similar situations in our area. That might be an idea for you. Best wishes! Jo Ann
I'm sorry to hear about your diagnosis - just know that all the emotions you feel are normal. I have finally accepted that we are going to have a son with CF. Before I got to this point though, I cried and told my husband it just isn't fair - why us?? I have begun to realize that he has been given to us for a reason and I can't wait to meet him. Just 8 weeks to go. Cameron (that's what we've named him) is going to be a very special child as are all children. I will say a prayer for you because these next few weeks aren't going to be easy. If you need to talk you can email me at debhain@comcast.net. Best of luck to you and your wife and baby Kaylee.
Thanks to all of you and your support. I know it hasnt been easy for any of you and its only the beginning for us. Thanks for all the info you have provided and feel free to email me as well @ gress2234@aol.com.Im sure we will be in touch.8 weeks isnt long to go! We still have a few months, as were not due until June, but I cant wait!Thanks again!Adam
Adam, Although I visit this site regularly, this is the first time I have seen your posting. I know it is tough to get the diagnosis, because I will never forget the day when we received ours. Ashley was 8 weeks old at diagnosis and it was a long 8 weeks so you are fortunate to know prenatally. She is also double Delta F508. Kaylee will definitely take enzymes because mutations determine the severity of digestive problems, but do not seem to affect respiratory problems. Today Ashley is 3 1/2 and doing fabulous. In fact she has never been more healthy. Another website, which also does not get much traffic, is http://www.healthboards.com/boards/forumdisplay.php?f=41.For fundraising, I recommend doing what we do. Participate in the events run locally, such as the walk-a-thons etc., but also create your own. We have done a golf tournament, 2 bowl-a-thons, a hockey game, a baseball game, and a cookbook. This allows you to work at your own pace and do things that you, your friends and family all enjoy. Contact your local association and they can help you get started. My only suggestion is to wait until you have adapted to your new lifestyle. Being a new parent is a big adjustment in itself, but you have the little extras as well.Congratulations on the upcoming birth of your daughter. I wish you much health & happiness.AM
Adam, Sorry to hear that your unborn child is at risk for having CF. My son was born 2 years ago and we found out that he had CF at his one week check up. We were initially in shock and denial, because there was no family history of the disease. As everyone else in this post says, you will experience a wide range of emotions, but in the end you will feel blessed that God has given you a "special" child. Like my mom told me after my son's birth, "God only gives 'special children' to parents He knows that can provide and love them like they need to be". Just keep in mind that God will never give you more than you can handle. I tell myself that everyday. Sometimes I just wish He wouldn't trust me so much!! Best of luck to you and your child. Family, friends and faith will get you through this.Jodi
Hi Adam,I love the name Kaylee, my friend's daughter is Kaylee too!I know of a few sites with more conversation. If you are a Christian, http://groups.yahoo.com/group/CF_4_Christians is great. If your not into that, http://groups.yahoo.com/group/CFParents is great too! another wonderful site is http://groups.msn.com/cystic fibrosis2chat is very active with parents, patients and loved ones of people with CF. these are my 3 lifelines! I am sorry for you loss of last year and I am sorry that you are getting hit with a CF diagnosis now. Remember you never know how long they will be with you- I know lots of "older" people with CF online. For more info on fundrasiers (and CF in general) go to www.cff.org and to help get a National CF awareness Month going go to www.cfawareness.orgSincerely,Andreamom of Rachel 5 with CF and a boy on the way- Still waiting on the amnio results on him