Really need good advice

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wclrl
New Member


Date Joined Nov 2006
Total Posts : 1
   Posted 11/26/2006 6:11 PM (GMT -7)   
My wife and I have recently found out that our unborn child has CF.  We are 15 weeks along with the pregnacy and desperately need advice from someone dealing with CF.  The child has the DeltF508 mutation.
We have been constantly asked by people if we are doing the right thing by keeping the child.  They feel that things will be too difficult and that the child will eventually hate us for putting him through it.  When we ask the Dr's anything about the disease all they are willing to tell us is the text book symptoms and definition.
We used to be sure and positive in our decision but with the constant see-saw of emotions, are we doing the right thing?  We are worried that we're being selfish by keeping the baby and not focusing on it's quality of life.  Could someone give us and idea about what to expect.

NeefaFeefa
Regular Member


Date Joined Aug 2006
Total Posts : 74
   Posted 11/27/2006 12:47 AM (GMT -7)   
"

"Don’t be afraid that your life will end, be afraid that it will never begin."

Hey there. I read ur message, and I'd like to share my opinions with you. My name is Emily, I am just turning 17, and I have CF. I have known about   mine since I was 2 yrs old. I would like to start off by saying that I do not agree with abortion in normal cases, and with your case, I still don't. Don't worry this won't turn into a lecture abt reasons not to get an abortion, as that is none of my business. But I do want you to know, that I think this baby should live. Like the quote at the top, telling us to live our lives to the fullest no matter how short or long it may be. Everyone deserves that chance at life. I do see your point about your baby maybe despising you in the future, but I see that as highly unlikely. Having a chronic illness like CF helps you to realize how much your friends and family love you, and what they would do for you. Yes having CF is definetly a down side in life, but there are so many good things in life that work to balance it out. Family, friends, love and caring, sunny days, snowing days, the beauty of nature and the world around us, and even the possibility of finding that one special person are all a part of the balancing factors. Of course having this illness can mean having hard times in your life, and I don't know if your religious or not, but in the bible God tells us that he will never give us more than we can handle.

CF takes patience and support, love and care. Sometims it takes strength; strength for the patient, strength for the family and friends. Do not forget that not all CF cases are bad. While some people are hospitalized multiple times a year, others, like me, have not been since I was 2 (although there were a few close calls). I have talked to alot of people with worse cases than mine, and not once did they think badly of their parents for passing on the gene. Life is a god given gift meant to give us strength and security, joy and love, friends and family, and any other thing u can think of. Everyone has hard times, CFers just have it a bit harder; but I have no doubt that any of us can pull through.

I know this wasn't the question you asked, and all I can really tell you abt what to expect isn't all that great; but what illness is? Sure you may have to do "pat pats" 3 times a day, deal with constant colds and not to pleasant diapers, coax ur child into taking meds, going to the doctor regularly, and possibly have to be with them in the hospital occasionally. As they get older they will have to adjust to new treatment methods, and start dealing with issues of sickness during school and absences; well they have health plans to help kids like us, so don't worry to much abt that. You see I can't tell you much on what to expect, as my life is only just beginning. I can however, tell you that I believe that you and your baby can make it through this; and if God has other plans then we can't help that, he holds our lives in his hands where he nurtures and loves us all. 

I would try turning to God, he really is up there.



"Sometimes I Thank God for Unanswered Prayers,


 


Chaser
Regular Member


Date Joined Apr 2006
Total Posts : 91
   Posted 11/27/2006 11:32 AM (GMT -7)   
I think that despite the fact that your baby has CF, he/she will be able to lead a for the most part "normal" life. I'm 25 years old, and was diagnosed with CF at the age of 6 weeks. I too have the double delta f508 mutation, and I can honestly say that my life has been for the most part normal. The doctors can talk about textbook cases, etc, but the truth of the matter is, is that every CFer is different. I've only ever been admitted to hospital for lung problems twice in my life, and have continued to have "mild" CF symptoms. People with CF are living into their 30s, 40s, and even 50s. Your child will not grow up to hate you. Just be honest with him/her about CF. Don't hide things from them. My mom was always up front with me when it came to my CF, and I love her for it. CF has made me the strong, independent person I am today. In all honesty, as you go along and learn about CF, any treatments, etc that you'll deal with will become second hand to you and a part of your life. CF will just become a part of your life, and it will get easier as time goes by.

Like I said, having CF may mean treatments, colds, etc, but it doesn't mean that your child won't be able to live a normal life.

cf angel
New Member


Date Joined Nov 2006
Total Posts : 11
   Posted 11/27/2006 3:06 PM (GMT -7)   

I found out my third daughter had cf when she was in my belly too, at 18 weeks.

Today she is three and soooooo beautiful, and very healthy. she takes enzymes before she eats, and 2 drugs in the nebulizer at night before bed.

Just recently I wrote a childrens book. Kyle's First Crush, about a little boy who falls in love with a little girl in pre-k.

The girl in the book is my daughter, ashley elizabeth. Everyone loves her.

I have met many kids with cf, they are all beautiful. Yours will be too. And your baby will live to be old and gray. It is good that you know now, so that you can be prepared. the key is early intervention. The drugs today are great too.

Good Luck, enjoy your special angel.

 


Post Edited By Moderator (Admin) : 12/27/2006 4:10:19 PM (GMT-7)


Mom4Life
New Member


Date Joined Jan 2006
Total Posts : 7
   Posted 1/19/2007 8:03 PM (GMT -7)   
I don't think anyone can really tell you what to expect because cf is so variable, but I can't imagine my life without my son and I'm so glad his birth mother chose life.

It's completely normal to worry about quality of life and even to "grieve" for the kind of uncomplicated life you daydreamed of. But after my son was diagnosed (at age 8) I learned a lot of important lessons. I learned that everyone has struggles and difficulties and that there are a lot of those that are worse than cf. I learned that "normal" is what you do every day. If you have friends with twins, you might wonder how they do it, but they wonder how people with only one baby can ever feel stressed. It's kind of like that when you have a kid with cf. You'll end up thinking that treatments and meds are just part of being his or her parent, and when people say things like "I don't know how you do it.", you'll just shrug and think "Well, you just do it." Yes, you might worry more than some parents do about sniffles and fevers, and you might be more likely to make a nightime trip to an emergency room, but you'll get good at this and be stronger than you ever thought you could be. You'll be fine and you'll be so glad that you made the decision you made. You aren't having a cf patient, you're having a baby - and it is going to be wonderful. Relax. You can do this. Don't get on the "Worst Case Scenario" runaway train. When my son was born fifteen years ago, the life expectancy for cf was twenty. Now it's pushing forty. By the time your baby is a teenager there will be a cure. That's the train you want to buy a ticket for.

BrendaE
New Member


Date Joined Jan 2007
Total Posts : 1
   Posted 1/20/2007 1:16 PM (GMT -7)   

I do not have CF but, have had two children who have passed away due to CF. The first was 26 years ago and she was only 4 months old, My son Jason passed away only this past Nov. at the age of 23. I miss them terribly but, despite all of the heartache I am not sorry they were born. My daughter was in the hospital the whole time and treatment has come so far since then. My son led a pretty normal life, only hospitalized two times until his last time. They added so much joy to my life. My son especially since he was with us 23 years. He enjoyed life to the fullest and lived life his way. He touched so many people in his short time here and is an inspiration. He was a Christian so , I know he is now in heaven "running" the streets of gold. Kids with CF are so special. I think they take each day with the knowledge that it is a gift and they know the meaning of "living'. They can teach us so much about how not to take things for granted. Each of us has only a certain number of days on this earth til the Lord takes us home. WE don't know the number of those days whether we are sick or not. There are many sorrows and struggles having a child with CF as I am sure there is with any illness a child may have but, I feel from my heart that the love and closeness and special days they bring to us so much outweigh all the bad. Have your baby and love and cherish each and every day with him/her and know what a true blessing it is.

 

Brenda


Michaelas Mom
New Member


Date Joined Sep 2006
Total Posts : 18
   Posted 1/20/2007 6:58 PM (GMT -7)   

Hi,

  I wanred to let you know that me and my husband found out in august that our daughter has CF. she was 17 months old. She is doing GREAT!!!! she goes to the doctors once a month. Her lungs are perfectly clear every time we go. you would never know she had the disease she is beautliful and very healthy. she has never been hospitilized with it. she is a very hyper child. she was borm weighing 5lb 15oz and now she is 24lbs and she will be 2 in march. she drinks 4-6 pediasure a day to help her gain weight. that is our biggest struggle getting her to gain. but in aug when we found out she only weighed 18 lb so she has gained 6 pounds since then which is great. she takes 2 breathing treatments a day in her nebulizer. she takes 2 meds in the am in it and 2 in the pm, she does them very well, then she gets the pats after them. she takes an enzyme with every meal and snack which she has gotten used to very well. she is also on a vitamin and zantac 2 times a day. it all becomes a routine for us now. she has not got a bad cold yet. we were upset at first but now that she is on meds for it i feel a lot better about it. I just recently had my 2nd child and we just found out that he is only a carrier of cf which we were so happy to hear, but i to was frightened when i found out about her cause i was already 20 weeks along. but we just hoped for the best but we were prepared for the disease. i wish i would have found out earlier. the earlier you start meds im sure the better. she also has the delta 508 gene. so i would tell you to keep the baby and everything will come out fine. the baby will do great im sure and hopefully they will find a cure for it in there lifetime. the median age for living goes up every year. i love my daughter to death and would never trade her for anything.

hope i helped you out feel free to talk when you need to.

Melissa


MGW
New Member


Date Joined Jan 2007
Total Posts : 1
   Posted 1/24/2007 3:36 AM (GMT -7)   
I have only been signed up to this forum for about 5 minutes, and really have no right to comment on your post with barely any knowledge or experience of CF. However, moved by you circumstances, and very aware of how wrenching emotional pressure with regard to our children can effect the power to reason, i thought I would just jump in with my view as an outsider.
Firstly, why I am here. I am seeking to learn all I can about CF. I have a neighbor of about 6 months,
A beautiful young mother I think in her early 20's who has CF. I can say with certainty the world is a better place with her in it, as I'm sure it will be with your's. I suppose she lives in the knowledge that the days of her life are finite, and she does suffer. And it is heart-breaking, i have seen her cough while we have chatted and her whole body just caves in to it, as though unable to offer any resistance. This, I realize is not the encouragement you might have wanted. But let me say, this young woman has something that I'm not sure can be gained any other way apart from suffering. Her Life is full of joy and Love. The first time I spoke to her I was astonished by her, and she remains an inspiration to me.
I am not arguing for suffering. I am here to find an end to it. i just think in our culture today we are quick to conclude that a life is not worth living if suffering is unavoidable. Also to consider, don't yield to hopelessness. Doctor's and tests can be wrong (trust me) and what if the cure is only a little further down the road?

Blessed Mom
New Member


Date Joined Jan 2007
Total Posts : 3
   Posted 1/30/2007 8:32 PM (GMT -7)   
I really beleive that fate brought me to this forum and your message.  I realize that several months have passed since you posted this but I very much hope that you decided to have your baby.  I spent all of my day at the hospital with my 18 year old daughter who has cf.  It was an exceptionally hard day and I was sitting here feeling depressed and frustrated because I can't just make this all better for her.  I was doing some research on the net and stumbled onto this forum when I read your message and realized that I should be and am thankful to have the wonderful opportunity of having a daughter who is the most courageous and heroic person I will ever know.  I won't lie and tell you that it's easy cause it's not but nothing in life that is worthwhile is.  I can't imagine my life without her and although I have seen her quality of life deteriorate, I don't think she would have chosen not to be born because of her cf.  I am so proud of my daughter and she has inspired so many other people throughout her life.  I would not have chosen this life for her and we didn't have the knowledge of her cf before she was born so I can't even imagine what you must have been going through when you got this news...but take my word for it, I can't imagine not ever knowing my daughter!  When my daughter was diagnosed with cf at 2 years old, the average age of a cf patient was 17.  Now, the average age is 32.  By the time your child is 18, they will most likely have a cure.  What to expect?  A strong wonderful child that will be blessed with parents that love them!  Anyway, thank you for reminding me what is really important
and to quit feeling sorry for myself!
 
Blessed Mom

slowcooker
New Member


Date Joined Jul 2007
Total Posts : 2
   Posted 7/28/2007 11:49 PM (GMT -7)   
I have cf and i am 35 years old and i had two brothers with this disease which are no longer here. you ask what should you expect? If you choose to expect anything , expect the best. Listen to your gut feelings about situations, get wisdom about what makes life possible, and pray to the Lord Jesus Christ. Also, be careful about medications and understand how western medicine operates-- by treating the syptoms. Sort of like from the back to the front, overlooking the cause and treating that instead. But at the same point, I am alive today because of this medicine and because of the strength and wisdom the lord has blessed me with.
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