Baby with CF

[anonymous]

My baby was diagnosed at birth with cf 8 weeks ago.
She is about to go into hospital for the closure of her illestomy.
I am finding it difficult to come to terms with this...are there any other parents out there who can offer some advice as i am very frightened.
Our medical staff seem very positive about the future treatment of gene therapy.
Is there any advice or information that you can offer.
Paula

 

[CFHockeyMom]

I can understand your fears. The first few months/year after diagnosis can be tough. I gets better though. You get into a routine and before you know it CF isn't as overwhelming as it once was.

Gene therapy is promising but still several years down the road. Our Dr. is telling us it's still 20+ years away. In the meantime there are new drugs all the time and we put a lot of faith in those helping us make it 'til there's a cure. The treatment of CF has come a very long way in recent years and the future is not as bleak as it once was.

Our CFer will be nine in August. You wouldn't know he has CF to look at him. He plays hockey and runs around with his friends just like any other kid. In fact, in the Presidential Fitness Challenge, he's done as well as his older brother that doesn't have CF. He's small for his age but has friends that are smaller.

Surf this forum there is a lot of information on here and a lot of positive/encouraging stories. <img src="i/expressions/sun.gif" border="0">

 

[anonymous]

Hi there, I wish I had some GREAT off-the-press news to share with you but since I don't (yet!) I can only offer you support. My daughter (now 2) was diagnosed just after her first birthday and I am still scared for her everyday-however it does get easier with time. If you would like to look at her website, feel free-maybe it will ease some of your fears to see that she lives (for the most part) like other toddlers wo/cf do. My best advice is to take action against this disease so that we will one day see our daughters (and the thousands of others wcf) CURED!!! www.cff.org will keep you updated on the drugs/therapy's that are in the pipeline and how you can help keep that pipeline full!

<a target=new class=ftalternatingbarlinklarge href="http://sydneymyers-ivil.tripod.com/
">http://sydneymyers-ivil.tripod.com/
</a>
My email is on the site, feel free to ask any questions!
Hugs,
Kelli (mom of Sydney 2 with CF)

 

[ehtansky21]

my only suggestion for the present is for when she goes into the hospital. make sure everybody that comes into contact with her has washed their hands. jsut like everybody else, hospital staff are not perfect and do not always wash their hands between each patient. this can at least help decrease the possibility of exposure to any of those yucky bacteria etc.
ethan sky's mom

 

[rose4cale]

When my son was first diagnosed I grieved for the life I thought he was going to have. I thought the worse and I was more scared for him than I ever could begin to explain. But as the months went on and I compared him to the others of his age without the CF I began to realize that his life wasn't going to be as different as I thought. He is an active 2 year old with the same temper and curiousity as any other 2 yr old. He loves to play games and run around. And what a time to be born with CF. They have come so far that I believe with ALL of my heart that by the time he is in his 30's, his life will be just as great as his sister's. Sure, he will be on meds, but those meds are going to give him a great life. We as parents, have to encourage them to be as normal as possible with a few extra precautions.

He has made me a better mother than I ever thought possible. I am becoming a stronger and more patient person. I have just simply been blessed by my kids and they have already taught me so much.

I still have my fears and slight little break downs. But I have that with my daughter too. She's going to start Kindergarten in the Fall. She wants independence, so I think of those more as Mommy moments. <img src="i/expressions/heart.gif" border="0">

I have put some of my anxiety towards fundraising for the Foundation. It is an outlet for me and I have met some incredible people along the way. It's been one year for us since his diagnosis and though it was quite a rollercoaster ride, things seem to be leveling out.

 

[anonymous]

Hi Paula, My daughter was diagnosed at birth as well. She is now 2 and is doing great. Fortunately she did not have any symptoms but it was a newborn screening test that caught it. I'm so sorry you are having to go through something so major so early on... but so many doctors.. and we've seen a lot... have said that we were so lucky that she was diagnosed early. We have been able to stay on top of things much better than if she wasn't diagnosed until later in life like so many others who go from dr to dr not knowing what the problem is.

My only advice to you is to make sure either you or a close family member/friend can be an outspoken advocate for you daughter. Ask questions and more questions and always seek a 2nd opinion. I found myself in one CF clinic and then decided to go to another more well known CF clinic and oh my...what a difference. It was like night and day and if it wasn't for my husband insisting that we see another facility I would have stayed.

If by any chance you live in the NJ / PA area the Childrens Hosp of Philadelphia is amazing.

Best of luck to you.

Jennifer (mom to Kimmie 2yrs w/cf)

 

[EmilysMom]

Welcome to the forum Paula,
My daughter was born with Meconium Ileus and had abdominal surgery at two days of age and was diagnosed at that time. I went through the same things that you are going through now. CF becomes part of your everyday life and you learn that your child can have a normal wonderful active life with CF. There are many wonderful new drugs and treatments for CF and they do get closer to a cure every day. I don't know how close they are or when it will happen, but it will some day...I do believe that!
<b>Now I will tell you, Emily just turned 21 in January.</b> When she was born, the doctor told us, we had a 50/50 shot that she would see her 18th birthday and in that time, the survival age has changed more and more every year.
She continues to do pretty well. She attends college and works a summer job at the American School for the Deaf that she LOVES, has a very steady boyfriend that she LOVES, enjoys life and lives it to the fullest. She is proof that CF does not have to be a deterrent to a full, happy life. You will see her postings on this board....feel free to ask her questions...she will always respond with honest answers for you!

 

[anonymous]

Thank you to everyone who has replied......I feel so much better...My husband feels very positive which helps me although i must get him down with my constant worrying..
I am from England and have to say this website is very good.... The one in the UK doesnt seem to get many posts....and it is great to read first hand from families who are in the same situation...
Thanks again to everyone who has replied and i will defo look up all the websites given...
Paula x

 

[HollyCatheryn]

<P>All of these moms have said such wonderful insightful things. I can't really add anything to that except to say that, like Emily (though I didn't have meconium ileus) I had a rather rough start as a baby. I wasn't diagnosed until I was 7 months and at that time I was in such shabby condition that they told my parents maybe I could make it to 2 years. IF I made it to 5 I would NEVER be healthy enough to attend school. Well, I turned 26 in May and am a stay-at-home mom raising my gorgeous 3 year-old. I teach violin, viola and voice lessons. I clean houses to help put my husband through grad school. There have been rough times, sometimes those rough times seemed to last forever, but the truth is that they don't. You do get into a routine and CF starts to fade into the background. Sometimes it will demand attention again and the routine will shift and CF will fade into the background again. You will find that as you go along and your life settles into a groove and you get to know your daughter more (heck, you all are still in what would be the honeymoon period for most mamas and their new babies) you don't see CF when you look at her, you just see her. I know that there are times that my mom still grievesmy having CF, but the joy over the person that I am and the life we have had together FAR outweighs the sorrow. Take it as it comes. Let yourself feel what you feel. It is OK to be afraid, overwhelmed, peaceful, happy, mad... and it is OK to ask for help. It is OK to get a counselor for yourself to help you get out your feelings and to vent on when things are too much. You will learn which of your friends and family can be support people to you and that you can be real with. Some people won't be able to handle it and that's OK, just let them go and hang on to the people who CAN be there for you and your daughter. Sometimes it is hard, when you have something like CF in your life, to allow other people to be scared or worried or overwhelmed by things that are small and insignificant by comparison. But do try to remember that their struggles are real to them and what they are struggling with may be the hardest thing they've ever encountered. Give them a little slack so that they can feel free to be real with you and the relationship can be mutual. It isn't a competition to see whose life is hardest - and it's a good thing, because you may often feel that you'd win.All of us are here for you and are "regulars." We are happy to be of support for you as you learn to live with CF and to laugh again. You will laugh again. You may think now that you will never be free from your sorrow, but the time will come when you realize that life is again in color and vibrant and joyful. </P>

 

[JT]

Holly,

I'm curious about the fact that you've cleaned houses in the past. I have a side Q: My wife insists I not only <i>not</i> clean b/c of the chemicals and stirred up stuff from vacuuming or sweeping but usually only does it when I leave. Are there certain products that you believe are safer for a CFer than others? Any particular kinds of masks? I'd like to help out in that arena but only if I can convince my wife it won't aggravate my lungs. I admire your wholistic approach in your posts . . .

 

[anonymous]

JT, I do the same thing your wife does. I clean the house with chemicals, dust and vacuum when my husband is not home. I usually do it when he is running errands (grocery store, drycelaning, dog food/toys....) so we are both "contribuiting to the household work". I think it is just out of our concern and although my husband wants to help as well, I would prefer he didn't use anything that could cause problems (even if it is just a "potential problem") and aside from spending a lot of money on a fancy mask, I am not aware of anything. You'd probably need something with a HEPA and chemical filter to make it worthwhile. Just my thoughts though.


Julie (wife to Mark 24 w/CF)

 

[HollyCatheryn]

I posted much of how I clean on the "safe cleaning products" (or something to that effect) thread here on the families side. I do not use chemicals if there is any alternative. The dust can be aggravating, but I have found a regular mask like you buy at the store or a bandana do fine. I also find that if you dust and clean with a damp cloth/sponge it cuts down greatly on the amount of dust released into the air. Feel free to ask any other specific questions about cleaning. As far as vaccuuming, it is beastly and carpets are just places to breed dust, mold and bacteria. If you have any options, get rid of them. There is also benefit to cleaning your bed regularly (the actual bed, not just washing the linens).

 

[anonymous]

Dear Paula,

My daughter Alayna who was born on June 15, 2005 was diagnosed with CF in womb. When we had an ultrasound done to find out the sex of the baby we found out the baby had an echogenic bowel. They tested my husband and I for the CF gene and it showed that I carry the deltaF508 gene and my husband has a rare gene G542X. When we found out of course it was devastating. Based on what we were told by the genetic counselor she made it sound like this was a death sentence for my baby. My husband and i took it upon ourselves to learn more. We did a ton of research online and spoke with people at the CF center in MI and learned that she was going to be fine. When Alayna was born she had Meconium Illeus. They were afraid she was not going to be able to pass the blockage and she was going to have surgery at 3 days old. They decided to give her 24 more hrs to pass. They put her on a soapsub enema and we waited to see if she was going to pass it. THANK GOD she was able to pass the meconium and now she is doing whata baby does POOPING!!!! At first the doctors weren't sure if she was going to need the enzymes to help keep her weight on so they waited to start her on them because she was eating and keeping it down. However last Monday I took her to the doctors for her first check up and she had went from 7lbs 1 oz at birth to 5lbs 13oz. Even though she was being fed every three hrs her food was just running throught her like a water faucet. The dr put it to us like this she has basically been starving for 2 weeks. That was devastating for us to hear. Now she has started her enzymes with applesauce and she is gaining her weight back. Since starting the enzymes Tuesday she is now over 6lbs. The CF Foudantion provides her enzymes and vitamin drops for free for 2yrs. The CF foundation is AMAZING. My family and friends helped us raise money for the foundation in May for the Great Strides Walk. Just keep praying

The only advice I can give you is to stay STRONG!!!! If you need to talk please feel free to email me anytime at js7881@wideopenwest.com

Jennifer

Welcome Alayna Madison w/CF
Born: June 15, 2005
Weight:7lbs 1oz
Length: 21 in
Time: 9:48 p.m.

 

[anonymous]

Jennifer, congratulations on the arrival of your baby. I remember when you first came on the site, it's amazing how positive you are now! I wish you and your family the best!

Julie (wife to Mark 24 w/CF)

 

[anonymous]

Congratulations on the birth of Alayna!!!

Kelli (mom of Sydney 2wcf, also born on 6/15)

 

[anonymous]

HI,
My son had surgery for a bowel obstruction last summer. He only weighed 17 pounds at the time. I spent hours trying to get him to eat. He screamed constatly and wasnt even walking at 18 months. Now he runs around EVERYWHERE (It is embarassing in the doctors office. ) Knowing your child has CF is much better than the other option. Seeing him miserable for over a year.

Now I go to so many specialist and give so many chest pts and breathing treatments that I am tired but happy. If you follow all of the doctors orders, you will have a much healthier child. Last summer another mother of a child with cf told me that. When I get tired I remember my goal, keeping my child healthyfor the time there is a cure.

 

[anonymous]

hI Paula,
I hope the surgery went well if your baby had it. What's your Baby's name? We went through the shock of finding out our baby, Amelia, has CF last January, when she was 3 wks. old. She's now almost 18 mths. I can completely relate to the shock and despair you're feeling. I can tell you that it does get a little easier over time. Enzymes and "taps" (as we call the chest therapy) become part of our daily routine. Once the baby's personality develops it's a big help. As a nurse said to me, CF is part of Amelia, but it's not who she is and don't let it define her. It's so true. I am hopeful about the future. I was fortunate enough to speak with Dr. Beall, the Head of the CF Foundation, after Amelia was diagnosed. He said that in 5 years a lot will change, and we can be lucky our babies are born now instead of even 5 years ago. We live in PA. Where do you live? I would love to keep in touch, because even though I have good friends, I don't have any friends with lives like ours. We're currently dealing with trying to make Amelia gain weight. She hasn't been hospitalized yet, for which we're thankful. If she doesn't gain more weight, though, we're facing a possible feeding tube, which is very scary. Amelia is our 3rd child, and my others don't have the disease. Please let me know more about your baby.
Good luck, and may God bless all of us. Cindy

 

[anonymous]

Cindy,
E Mail me at pastead@bored.com. My baby is called RUBY and she is beautiful. She has already had to have 3 operations on her bowel and the surgeon has said she may need another one because her stomach wound is leaking....Its a nightmare at the moment. I am in hospital and ruby is about to start breast feeding. She is a brave tough little fighter and i am sure she will pull through. Her weight is gaining. She is only 11 weeks and has had to go through so much..I have a two year old w/o CF called Joseph who just adores his sister. The future is really hopeful here in the UK and my doctor has also said that even if a cure does not happen soon he certainly believes that there will be something just a good.

i am like you...I am even ashamed to say that i did not know what CF was!!!
Obviously our friends dont
really understand what it is all -about -and it is great to chat to others who are or have been through the same situation. I especially love hearing from Adults who are living a good life...Thats all i want for Ruby........E mail me at above address...I may not be able to get to you straight away as i am in hospital..(just nipped home ) but i will let you know how we get on with Ruby..
Paula x heres for a Brighter Tomorrow x x