Couldn't find what you looking for?

TRY OUR SEARCH!

I want to know something about cystic fibrosis in children. My friend is 5 months pregnant and prenatal analysis showed that fetus is suffering from cystic fibrosis. So, how serious this illness is? Should she be concerning an abortion? I mean, is this disease curable or not? I would like to help her, at least with some information.

Loading...

I am afraid that your friend is in not so good position. Cystic fibrosis in children often proves fatal in period before twenty years of age. Some patients, around thirty percent, live up until 30 years, and after that only 9 percent survive. And, unfortunately, that short lifespan is filled with pain, stress, regular hospital checks, in one word, life not worth living. So, I think that your friend stands in front of a big and hard decision.
Reply

Loading...

I am the mom of a little boy with CF. It is the hardest thing I have ever had to go through. In his first year of life he was put in the hospital (and stuck with many needles) at least 6 times. I ama not an advocate of abortion BUT I will never have another CF baby again. I plan to do in vitro fertilization next time. It is painful and stressful for these poor children.
At the same time though I could not see my life without my little angel. He is the happiest little boy in the world.
Reply

Loading...

im a mother of a daughter with cf, yes it was very hard news to handle, she was 18 months when we found out and just tuned 2 in june. She is the light of my families life. but to hear you will never have a cf baby again, you don't know that, nothing is a guarantee, your were given your son for a reason. You should be worried about FINDING A CURE FOR CF, JOINING GREAT STRIDES AND CF FOUNDATION!!! I wouldnt trade my life with my daughter for the world and if i had it to do all over again i would. GOD would not give us anything we can't handle!!!!!!! Just remenber that
Reply

Loading...

Hi my name is Heather I am a 23 year old female that lives with cystic fibrosis EVERYDAY! you know its kinda sad to know that there are ppl out there that really do regret having children with cystic fibrosis! I am a very happy person who loves life and lives it to the fullest! i have a beautiful 6 year old daughter without cf and i am epecting another in may! I think everything happens for a reason and i do believe god wont throw anything at us that we cant handle! I also have a 17 year old sister that has cf also, and she agrees! dont be selfish! doctors are coming up with new med and new stratagies all the time! tell your friend not to worry, keep her head held high! and not to EVER give up! it truley does make you a stronger person!
Reply

Loading...

Boy, Heather..I dont even know what to say..it must be stressful to read these comments. I am the mother of a 19 year old female and it has been extremely frustrating to have a child with this disease but it wasnt because of the child. My daughter is doing very good considering. She has been encouraged to follow her routine for good care. The hard parts of the disease are making sure she was insured. Going thru the system to make sure she will be taken care of in the future. Since we are in a generation that are just now living to these ripe old ages, Social Security Insurance doesnt quite understand that these children will die without coverage. If you feel like your child will require SSI to be covered, it is a horrible process to go thru. That is the government for you. Her drugs run about 120,000.00 a year to stay alive. For a parent, this a lifetime of worry.

At the age of 19 we cant even tell you yet how painful her disease is and how miserable things can be, because we havent gotten to that stage yet, so its not true they have a lifetime of pain. Some kids start getting sicker at younger ages but if you work hard following doctor instructions, the child should be able to live a happy life for a long time.

Now the child will have a rigid routine they have to go thru but the family can get used to that. I cant say it was fun but it is something you can adjust to. It helps if both parents stay together and stay strong. When the child gets older they try to avoid following their routines and arguing and nudging them will occur.

The worst part for us, is the cost of the disease. Save all medical records all the time and start learning about the medicaid program early so you know what you are doing. I suggest learning up on help from the state even if you have insurance. You might not have that support one day and since the SSI process took a year to get her on it, start it as early as possible andfind out who your senators are, you will be writing lots of letters and you will be doing a lot of crying and begging for this process to go thru. I survived. Life is so much nicer for me. She had to get an apartment and move out on her own to make the government happy. I was afraid she wouldnt do her meds if not monitored but she is doing great. She likes being on her own. We tell her if she doesnt do things like she should we will drag her back home to live...lol.

If I had a choice and it was early on, I'd have an abortion but never late term abortion. Sorry if people dont agree with me...but Id be leaning that way.
Reply

Loading...

Adelind , I am a mother of 4 boys 2 with totally diff diseases my oldest w/ CP and my youngest w/CF . I think that you should be ashamed :'( , childern are Blessings not burdens . They are Gods gifts to us !!! A true greatful mother would take this lovin gift from God , love them and always aways cherish them. Yes , its hard at times but hey Life is hard. They are not toys , you cant just send them back if they are defective. Have a heart. This is a life !!!
My sons ,all 4 of them are my life . I pray God protects them and keeps them safe from any harm or battles they have to face. If they have a lovin home ( parents ) to guide and protect them , everything else will fall in to place.

It is a rollercoster ride w/ ups and downs so make sure your fastend in , in so thankful for me seat . No regrets at all!! Proud to be the mother of my lil men!!!!
Where theres trust in GOD theres always a way ... ;-)
Reply

Loading...

Hi, I'm Chelsea and I'm 18 years old. My little brother is six years old and has cystic fibrosis. I've pretty much raised him since he was born because my mom isn't big on the whole being a mom thing.haha. Living with a child with cf is difficult, but is the most rewarding thing I have ever had the grace and the honor of doing in my entire life. There are strict routines we have to follow that my brother doesn't always agree with, and certain things that he can't do that makes him a little upset. We once went camping, and were doing his vest outside of the tent. His vest keeps all the fluids in his body moving steady and beats any infection out of his lungs. Somebody actually walked past us and began staring at kevin and whispering and laughing because of this. kevin, being the heathen that he is, through his pop at them and started laughing too. This started up a conversation about a cf walk going on in fort wayne. they weren't laughin at him for looking funny on his vest or being different. they were laughing at him because he kept yelling and giggling so he could hear his voice vibrate. When a child is born with cf, you learn of an entire new world. They make friends at all their six month and yearly check ups, plus when theyre sick and in the hospital. Their nurses know them personally and actually become really good friends with the family of the children. Support groups are everywhere for people who have difficulty coping with the fact that their child might not have a life like everyone else. But you can make them have a better life than everyone else. It takes real dedication and love and nurturing to deal with this. It goes on the rest of your life. With the advancements being made the life expectancy can be in the 50s 60s and 70s. Alot of people are living long full lives now as long as they take care of themselves. NO SMOKING! Be careful with dust, cold weather, pneumonia in other children, and even the common cold. Give them their medicine and dont be stingy with the food. The extra calories help. Kevin has been a blessing to me. he's taught me what it's like to actually love someone and he's brought me and my other brothers together like nothing else could. Be grateful for your child, cystic fibrosis or not. They'll bring you something nobody else in the world can.
Reply

Loading...

I realize the original post is old but I am posting this in case others are reading the thread. My husband has cystic fibrosis. His genotype is homozygous delta 508, the most common and one of the more severe mutations. He is 25 and has near normal lung function and no other symptoms other than our inability to conceive. He has been working full time for 4 years as an engineer, is finishing his master's and we are in the process of adopting a little boy from foster care.

Some of the information given above is outdated by quite a bit. The average age for death with cystic fibrosis in the US right now is 37. In Canada, this age is 47. This likely reflects the difference in health care which is very very important for the outcome of cystic fibrosis patients. It is estimated that children born today with cystic fibrosis treated with today's technology will live into their 50s.

Cystic fibrosis can be a burden. My husband has to spend an hour and a half doing nebulized medicine and physical therapy for his lungs but he is generally working on computer work while doing this and it allows him to live a healthier life. In the future, treatments will only get better and your child has a good chance at a long, fruitful life. Before making a decision to abort, meet with a cystic fibrosis patient or doctor. See someone who knows about cystic fibrosis today and about all the outcomes as opposed to just the sad ones.

I'd imagine finding out your child who you love and have been dreaming will suffer would be painful but I am writing this to encourage you not to abort due to fear. I am very glad my husband is here today and his case is not abnormal for cystic fibrosis patients will proper care.
Reply

Loading...

Hello everyone, i have a lil sister 13years old not doing so well she has CF. it it is so hard on the family because even thought a lot of cf patients live a well happy life. well my sister doesnt. my step mother n farther wont tell me what other problems she has too. she is sick all year but in order to get a lung transplate she cant be sick for a year. But is kills me to say as i am reading so much of all this information about CF. but is it true both parents have to have at least 1 gene of cf. because when i had my son i got tested when i was pregnant not a gene n when my mother n father when they were together it was a law up there b4 idk now but u had to get blood tested for things b4 u were married n my mother told me my farther or her doesnt have a gene of cf. n my fathers family even though we love my lil sister this hole time we had lots of douts she was really my fathers. but idk maybe im thinking so hard cuz i swaer she looks like us but more of her mother. n if its true about the gene. i cant face my father n tell him. idk if he knows himself n just doesnt want to tell no1 n be there for her because she dont have no1 one. her mother told my father she was pregnant when they were not together. but this lil girl i love her so much n she means the world to me. i dont want to start a war in my family. i just need to know the truth. its like if i know if it is true i know i will be so upsett cuz this lady caused our family so much pain with her lies. but i read books internet. but i need to know from people who spoken to the doctors can it just be one parents who carries it. no matter what i am going to be in my sisters life. i just want to know the truth. can anyone please answer my question?
Reply

Loading...