New member, my baby has been diagnosed with CF

[anonymous]

Hi,

I don't know very much about CF, I am a mother of 4, I have 3 girls & have long awaited the birth of our beautiful baby boy, all was well till we had his guthrie test done & he was diagnosed with CF at 3 months, Kieran is now 7 months & is having to take enzymes, ADEK vitamins, Antibiotics for preventing chest infections & oral thrush medicine due to taking prolonged antibiotics. I sometimes cannot believe there is anything wrong with him, he is quite a chubby baby & looks so healthy. I also feel that if I ignore it, it will just go away, I just want to bury my head in the sand & not think about it, is there any other parents in my situation or have been there before that can help me understand what is ahead of me? I so want to know, yet I'm scared of what the future holds for him, I have read a few sad stories of people's experience & their will to give up on life. I also have a niece with spinabifida, who is 13 & has gone through so much, will we have as many operations & bad experiences. I am so worried about losing him to CF, especially as we have waited so long for our baby boy, any advice or experiences would be a great comfort to me..

xxx Shirley xxx

 

[anonymous]

i know how horrible it all is im going through the same i found out about a year ago when my daughter was 3 and i was pregnant with my second. if you have any question u could email me at rhowan@aol.com

 

[anonymous]

Shirley-
Welcome. You have been blessed with four beautiful children. You have a lot to be thankful for. It is very challenging in the beginning of the diagnosis to see the good things in life, but it is what it gets me through each day with joy.

My first child, Sophia, was diagnosed at 6 weeks of age. We did not have family history of the disease. My nephew, who was four at the time, was diagnosed a few weeks after Sophia. My husband and I decided to have a second child, after all there is a 75% chance of no cf. Well, our second child, a son, Jack, has cf as well. So that makes three of the four grandkids on my husbands side with cf. Challenging, yes, but we choose to see how we are blessed. I am SOOO thankful for the medications that we have today so my children are able to thrive and live a wonderful life. My daughter would not have made it without enzymes. My son would not have survived meconium illeus without the technology that we have today. What an unbelievable gift my husband and I have been given.

Read through the post "Message to God" below and I answered some questions that explain more about how God can help you get through this.
Sharon, mom of Sophia, 3.5 and Jack, 1.5 both with cf

 

[anonymous]

My son was diagnosed at 18 months. He had two bouts of mild pneumonia and his pediatrician suggested we get him tested for CF because there was a family history of it. He got over pneumonia very easily and hasn't had it since his diagnosis 3 years ago. He also looks very healthy and does everything a five year old should do (he'll be starting kindergarten in the fall!). It's easy to forget that he has CF and tempting to ignore it. I went through severe depression several months after he was diagnosed, after the shock wore off. I didn't want to talk about it, I wanted to sleep all day, I gained weight, I was constantly anxious, and I even skipped his breathing treatments. Fortunatly my family was very supportive and took over during the bad times. I got help and my depression is under control, I still have my bad days though. I will always feel guilty about "ignoring it" and skipping his treatments. The CF clinic reassured me that it wasn't detrimental since he lungs were crystal clear. I think every parent of a child with CF goes through some form of denial and feels like burying their head in the sand. You are not alone. Find someone to talk to and to help you get through the hard times. It is discouraging to hear negative stories, and I still get a lump in stomach when I hear about some of the problems my son will encounter. Hearing about the struggles and suffering involved is very difficult but it has made me more appreciative of his life and I cherish every moment with him. It will get easier and I wish you the best.

 

[anonymous]

hi...i am a 25 year old with Cf so i cannot say anything from a parents point of view. All i can say is i know that no two people with cf have the same exact outcome... i knew someone when i was 8 who died when she was 11, but i also know someone who is in his 50's. it varies so much..all you can do is cherish the time.. and treat them as you do all your children. i have known other people growing up, whose parents didnt always make them go to school because they didnt figure they would live that long..now they are grown up and dont have the skills and education to support themselves... you really have to just trust your doctors, and medical staff...but dont ever be afraid for a second opion on treatments. i am 25 i have a lung function of 25 %, i have osteoporosis, and arthritis, i am developing problems with my blood sugars, i have a implated IV medicine Port Cath which is not as bad as it sounds...and i just recently decided to have a feeding tube implated..to bring up my weight which has recently fallen to 94 pounds, about 3 years ago i started coughing up large amounts of blood from my lungs...but as bad as thats sounds it is treatable...and now i dont have that problem...i will admit i have been through alot... but i dont regret my life at all, i have attended college.. i have a wonderful family support system( which is really important i think), i try to do anything i want..i keep busy...i have a wonderful bf... medicine has come such a long way in just my life time...im sure it will advance even further in your childs life...i can still remember when they first identified the gene that caused CF...other than being born with the meicolluim illis problem, i stayed pretty much healthy until i hit puberty... i still keep very busy, just different things then when i was young...i do arts and crafts, i garden, i go camping (not in a tent anymore, for health reasons), i go out with people my age and have fun...but i still have to pay attention to my medicine regiment..but all in all i have a good life... its not all sad stories.so good luck to you and your baby and god bless.

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: xxx Shirley xxx</i><br>I don't know very much about CF... I sometimes cannot believe there is anything wrong with him, he is quite a chubby baby & looks so healthy. I also feel that if I ignore it, it will just go away, I just want to bury my head in the sand... <hr></blockquote>Dear Shirley,

Is it OK to believe there is nothing wrong with him and enjoy that moment? By all means, yes. But as you believe it, still you do the treatments, give the medicines, press the doctors for answers, make better and more informed health care choices, love the child. By all means.

You know a lot. Think about all you have learned, and take a moment to appreciate how you have already risen to meet such an unexpected challenge. Look ahead a bit, from the vantage point of what you have already learned. Add to it your loving family environment and positive commitment and healthy outlook, and what can you expect? How about this?

Your Kieran will be in charge of his own care, a young man who will have learned to do the treatments, take the medicines, press the doctors for answers, make better and more informed health care choices, and love life. He will know how to and nurture his good health and make the most of it. He will learn this from you, and such learning will be a great gift. You read this board and you see lots of people who do this. You can do it, and so will Kieran. You already know this, don't you?

CF Adult's Dad