My daughter in law just found out by aminocentesis that the baby she is carring has cf. Has anyone else had this experience, my heart aches for them. She wanted to know before the birth but is having a difficult time since finding out . She is having counseling but is still not doing well. They do have a three year old boy who has not been tested but seems fine. Any suggestions for support for both my son and daughterin law?
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prenatal confirmation of CF fetus.
- Thread starter anonymous
- Start date
There are so many advances in CF just in my life time (I'm 37) and your son & daughter in law are really at an advantage in that they know of the CF before the baby is even born, so the docs can get on top of it, if need be, from the get-go. I really feel that during the baby's lifetime, there will be a cure or some great advances in gene therapy, new medications, etc that will help the child be healthy. CF used to be a pediatric disease, but there are quite a few of us "older" CFers out there, I am discovering. It is/can be a serious disease, I don't want to downplay that, but it isn't always as bad as you may think. Only God knows what our future holds.This website would be a great source of strength/support for your daughter in law.It's good to know you're not alone in dealing w/ CF.I will say a prayer for your son & daughter in law during this time<img src="i/expressions/face-icon-small-smile.gif" border="0"> God Bless
I found out at 21 weeks that my unborn son had CF. My husband and I struggled with it as we didn't know much about it. We made the decision to continue with the pregnancy and I did as much research as I could, met with the CF Director at Childrens Hospital in Michigan and prayed a lot. Two weeks ago I gave birth to the most beautiful baby boy I've ever seen (maybe a little biased <img src="i/expressions/face-icon-small-smile.gif" border="0">. Please tell your son and daughter in law that it is a very scary time, but knowledge is power and the more they know the better off they'll be.I will keep them in my prayers as I know all to well the pain they are feeling. We all have a difficult road, but hopefully they will find a cure sometime soon.Best of luck to you and your familyDebi
Our first born was dx. with CF when he was a week old. My husband and I grieved for about the first 3 months of our son's life. During that time, we were so focused on the fact that he had this terrible disease, we missed out on fully enjoying him as a person during this time. Your daughter will eventually be thankful that she found out now. This way she has a few months to research CF and educate herself on the disease process. By the time the baby is born, she will have already gone through a majority of the grieving process and will be able to focus on enjoying her child for who he or she is, and not be so focused on the fact that he has CF. Another positive about her finding out now, is that her child will begin the proper treatment immediately. This will add years to his life!! My husband and i just found out we are pregnant with our 2nd child. We plan on finding out prior to the birth if the baby has CF or not. Please let your daughter know she is not alone, and not to believe everything she reads on the internet regarding CF. Best of luck to her and your family. She WILL make it through this difficult time. God will never give her more than she can handle. I truly believe that.Jodi, mom of Tucker w/CF
I found out my unborn baby had CF 3 weeks before she was born (long story how . . . ) It was devastating and terrifying. Like the previous message, my view of her during her first few months was dominated by my fear and grief, and it affected my bonding. I started seeing a therapist who helped me realize what was going on. I was able to fall in love with my baby then, and love her as a person, not a kid with CF. Your daughter may not have the same experience, but if she feels in a fog or disconnected, or too sad for too long, I recommend counselling. By the way, I whole-heartedly agree that early diagnosis is a real blessing. We feel very lucky because our daughter got the best medical care from day 1. My daughter has been amazingly healthy for 12 years. If we had known when she was born that things would turn out so well for her, it would have saved a lot of pain. So tell your daughter and son-in-law not to despair -- they will have a child they will love with all their hearts, and each child's experience is different. They will have to put in extra effort to keep their child healthy -- that comes with the territory -- but they have an advantage that their child will not go through years of life and misery undiagnosed and untreated. The future should be very bright for your family. Congratulations on your new grandchild!
I want to thank you all for your postings. I am the daughter-in-law that is referenced in the first posting. It has been very hard on my husband and I to find out our second child to be born in August will have CF. But as you can see it has also been very hard on our whole family. I agree that it was important for us to find out now because believe me we have been grieving since receiving the news seven weeks ago. Everyday gets better and better and I know this child will bring much love and happiness into all our lives. Again, thank you. I find all your words of wisdom comforting. Paula Regan<img src="i/expressions/heart.gif" border="0">
hi my son has cf i found out through screening but my oldest is fine... i just want you to know that yes it is hard to deal with all the information, but with the support of your family and help with each other you will be fine.. it's not easy all the time but sometimes when you see your childs face and their smiling it's the most precious.. so hang in there the both of you all our love. my name is lisa
I have a daughter who is almost 4 and was only diagnosed at 8 weeks old. I know it is hard to realize now but it is best to know before the birth. Our daughter screamed 24 hrs a day and had up to 15 bowel movement's daily. Every time we took her to a dr or the emergency room we were told to go home. I think they thought we were nervous because we were first time parents. It must be difficult to know before hand that you have a CF child but it is also difficult to know that the baby you hold is very sick and harder to find someone that will take you seriously.It was a tough time not knowing what was wrong and I wish that we had known before. This would have given us the chance to grieve before she was born and enjoy her during those first months. I can honestly say, and I've told the CF team as well, that I did not enjoy being a mother until she started taking her enzymes (and stopped crying of stomach pains and starvation).You are one step ahead of the game if you know before and you have come to the right place for support.Good luck!Heather
Hi Paula,My son is 12 months old with CF and we didn't know until he was a week old due to a screening program in our country.Like the last mother said I didn't enjoy motherhood until he was diagnosed, as he screamed non - stop with stomach aches and wanted to feed all the time!I passed out at a shopping mall one day as I didn't have anything left to feed him!!Once we got diagnosed we started the treatments and learnt what we were dealing with.I think it will take me years to feel ok about CF, to be honest every time he shows a symptom of CF I get scared but it is a journey and I know that my son and my family are very fortunate to have the dx early and learn to try and control it as much as reasonabley possible.I really do wish you all the best of luck, the shock is the worst bit, but you come down from that and start to learn about what you are dealing with and you do start to enjoy life again.I thought I could never smile again, but here I am enjoying my son and our life together.One day we will beat this disease! Rebekah Mother to Matthew 12mths Wcf
Paula,My daughter Hannah has CF and is 11 1/2 years old. She was one of the most beautiful babies many people had ever seen and won 48 pageant titles by the time she was three. Today, she is healthy, vibrant, and active. She is a cheerleader, plays soccer, takes piano and flute, has taken tennis lessons, is involved in area drama productions (recently as a Lullabye League girl in The Wizard of Oz), takes ballet, tap, and jazz, sings in church choir, and is a straight A student. She is very social and gregarious. She swims like a fish! She appears healthier to me than some of her friends! She has only spent 2 nights in the hospital over the past 11 years. So, yes your child has CF. I was devasted at first too, but you'll find out that it's not nearly as bad as you think. Sure, we spent an hour a day with a vibrating vest. And yes, she has to take enzymes to friends' houses when she visits. But, overall, she has a normal, healthy, very active life. I pray you'll have the same experience.
Paula and family-In so many ways you are so lucky to have the dx now. When your child is born he or she will be able to receive treatment right away. There have been so many advances in the fight against CF and so many different medicines and treatments. This is one of the best times in history to have CF. CF is a fightening disease, but there is so much hope. Hope is the best thing you have right now. When my son was dx at two, his doctor told us, "even though (Sean) has CF, all your hopes and dreams for him can still come true." We fight very hard to keep those words a reality. We followed his advice and so far have managed to give Sean a completely normal, happy childhood. We treat him exactly the same as his sisters (except for his enzymes and chest therapy). We discipline him, love him, and talk about his future exactly the same. He will start first grade in the fall, has lots of friends and is one of the biggest lights in my life. My best advice to you is to call the nearest CF clinic (if you already have not located it, you can find one at www.cff.org and then click on the CF care centers icon). Meet with the doctor and the entire team there. They will give you a lot of great information about things you can do now and things you can start doing once your child is born. You also might want to ask them if there is another mother or family with whom you can speak. A lot of times, clinics have support groups. Other CF families are an amazing resource - they can tell you things that only another parent of a child with CF can now. They have gone through what you are going through. They survived the pain of the dx and so will you. It just takes time. The only other piece of advice I can give you is to allow yourself to grieve. It is normal. Grieve now so that you will be ready and able to welcome your new baby into your life. All babies are special. They are all blessings. Congratulatons on your pregnancy. I wish you, your new baby and your entire family a lifetime of happiness. Please keep us posted. Everyone on this site would be happy to help you through with what you are going through. You might even want to see if someone here lives close to you. (We live in San Diego.)Take care,Katrina, mother of Sean (6 w/cf), Carolyn (4 1/2 w/o cf), and Allison (2 1/2 w/o cf)
AbsintheSorrow
New member
Okay obviously this is your decision, but why are you sharing that here? Do you really think we (we being CFers and loved ones of CFers) really want to hear that you aborted your baby because it was going to have the same thing I've lived with for 20 years? Not really. So what's the point of telling us that?
I am sorry that you had to go through terminating the pregnancy, I know it must have been a difficult decision. I happen to disagree with your position. Both of my children are precious, despite the fact that I am told that they have cf. Honestly, it amazes me sometimes to think they even have a disease. If you would spend a day with them, you would have no idea they had what you call "horrible disease." Perhaps you should spend some time with those who have cf, if you find yourself in the same circumstance in the future. You might be surprised at how this "horrible disease" you describe is not so horrible as you think.Sharon
And if there is a cure in 5 or 10 years I wonder what you will think then. Like Sharon said these kids are doing great things these days. Their brains are fully intact and for the most part they live as normal a life as you or I. I am guessing you and your wife were the ones who could not handle living with it.
so pretty much when you try to have another child if it turns out to be cf again your gonna abort again???? how many babys are you gonna kill to have one thats perfect??????? and it could also have somthing far worse than cf.......... just somthing to think about.....MOM OF A CFER!!!! and proud of it.. i wouldnt trade him for anything!!!!!
I agree with Emily - why would someone go to this site and write an email like that?? This site is for supporting those with cystic fibrosis and their families. Personally, I think someone was just trying to stir up emotion and controversy. I am sorry that this person has nothing better to do with his/her time. If that person wants to just wants to justify his decision - he came to the wrong website.And I should ask this person - what would you do if your child were in a terrible car accident and ended up paralyzed for life? Give up on him? Say his life is not worth living?I'm not wasting another second on this.
If my wife and I do decide to have another child, we would abort that child if it too were diagnosed with CF. As well, we aided my wifes mother in suicide who had been living with Alzheimers for 3 years. So, to the individual who asked if we would "give up on a child who was paralized in a car accident" we would also assist our own child with suicide. There is no honor and dignity in disability.
I understand women who abort when the foetus is diagnosed with cf. This disease is still uncurable nowadays and no one knows if a remedy can be found in the future.My daughter was diagnosed with cf when she was 3 months old, thanks to the screening program. She had trouble to breathe when she was born and stayed during her first ten days at the hospital. Now she is 20 months old. She suffers from severe pancreatic insufficiency and respiratory troubles. She experienced several bronchitis, first due to bacteria (Hemophilus influenzae, staphylococus aureus and MRSA) and then to fungi. Her last throat sample revealed Aspergillus fumigatus. I don't think she will lead a very pleasant life with this disease.I don't think I would be courageous enough to abort if I am pregnant with a cf child. And I wouldn't afford a second cf child. So I won't have another child.
I think the abortion poster is indeed trying to stir up controversy or is incredibly shallow & self centered. If what he's saying is true, then he must be in such a social circle that having a child that is "imperfect" just wouldn't fit into their little plans. I would suggest getting some real friends, if that's the case, not materialistic, superficial, shallow, phony ones that would judge you by the children you have. Life would be a whole lot happier for you<img src="i/expressions/face-icon-small-tongue.gif" border="0">