My newborn has CF

[rkzmom]

I don't know if I'm doing this right or not , I have never been in a group like this over the internet.   My son was born on April 13th and one week later because of the newborn screenings we found out he has CF.  I am just looking for moms who are going through this..I have had a week to try to get used to the whole idea of it ....needless to say it has been one very emotional week.  I also have 2 other boys who are 4 and 7 who are going to have to be tested and we are praying that neither of them have it.  We didn't even know what CF was until all of this happened so we were definitley thrown for a loop.  I would love to talk with some moms who can help us know what to expect on the day to day.   Thanks.  

[shelly43]

Hello,

Welcome to our group, here you will find support and advice, someone who truly understands. So many people don't know what it is. I know that I felt like a Cf information site for awhile always explaining what I'd learned to friends and family. I had never really heard of CF before my son was diagnosed either, it happens that way alot. Since people with CF should never be in the same room except siblings, a web site is a really good resource and support group for us Mom's.

It's a learning time for you but mostly I would say that you need to try and relax and take it all in. This is not the end of the world but I know exactly how frightening it can be. They say that when you find that you child has a serious medical condition that you grieve for the lost dreams of what you thought you child's life would be like, for just wanting him to be normal. I think this is true, I know I did. But I have to tell you that catching this early is wonderful news and will help your child alot. There are new meds and treatments coming and although my son is 9  the CF doctor believes they will find a cure in his lifetime, and tells my son it's his job to stay healthy enough that when it comes he can be cured.

I'm assuming you have been to a certified CF clinic? If not find the closest one and let them know what's going on. A regular Doctor or Pediatrician is not good enough for this. You want a CF specialist. We have a Pediatrician for regular check ups and things like sprained ankles and well child shots. But any cold or tummy trouble call  the clinic.

The best advice I can give you is to be consistent with the treatments the doctor sets for you to do, No skipping. Teach your child as they grow the importance of doing there meds consistently. Be aware of the signs your child shows when becoming ill. The small signs, so you catch each bout early and prevent it from becoming a big illness as often as possible. My son gets cross and falls asleep too early and often has increased clubbing in his fingers as his first signs of trouble. I listen to him breathing ( I suggest getting a stethoscope and learning to use it) while he's asleep, snoring and coughing or even clearing his throat can be the first sign of trouble. I've made him do extra treatments for a few days here and there just because I've heard him snoring a night, lol But he has only been admitted to the hospital once in 9 years, lol

The respiratory therapists at that hospital visit explained to me how they have seen the difference in how often a child is admitted. The ones who are consistant with their meds and treatments they see once a year or less. The Cfers that aren't compliant to their meds and treatments are in the hospital 2-3 times a year and aren't nearly as healthy, My son was 7 at the time so had never had a chance not to be compliant, lol But after that we both agreed that to stay out of the hospital is was worth it to be compliant, lol

I hope this helps and god bless, feel free to ask questions any time.

[BabyGus]

I know exactly how you feel.  My son was diagnosed by the newborn screen when he was 9 days old.  I had no idea I was a CF carrier, and didn't know anything about CF either, but you will learn a lot.  You will need to start going to a CF Care Center and you will meet with about 10 different people who will become you and your sons best friends =)  I think I cried for about 2 weeks straight at first - it was hard to even look at him, I would just see the CF not my perfect little baby (he is my first.)  But I will tell you - even if it doesn't seem like it now - it will get better.  I know something that helps me is to learn to compartmentalize.  I spend an hour a day messing around on CF websites, learning more, talking to others about it, or I just let myself be upset about it and "grieve".  Then I am done and besides taking enzymes before each feeding, doing CTPs, and ADEK vitamins he is my normal little boy.  I have been lucky in the fact that he eats so well and has been gaining weight like crazy.  But on Thursday he started getting a cough and it is making me nervous.  He had a pediatric apt (2 month shots) on Friday and she said he was find it wasn't in his lungs so I probably shouldn't worry about it but I think being a first time mom I am not sure what is CF and what is normal.  Have your other two boys been pretty healthy?  I hope that they don't have CF as well but I am sure it is stressful waiting to find out.  I pray that they don't have it and that your little one stays healthy.  I also pray for you - I think sometimes we parents need the most help with it!  Brady is only 8 weeks (March 10th) so this is very new to me - feel free to e-mail me anytime [e-mail]

[blessedmama2008]

We have a lot in common, I found out my baby girl had CF with the screening also. Shes 7 /2 mths now, she only takes 1 enzyme with each meal, aquaDek , and CPT's. She also has a nebulizer. When I hear a little rubble, I start her treatments. I cried for a few days, I was totaly lost. When we went to see the CF doc, I didnt hear a word she was saying, lol. I did a lot of research finally and asked a whole bunch of questions too. The ladies at Cafe Mom in these groups have been a lot of help too, most of the time they answer your question before you get a chance to ask, lol. By answering someones elses questions.

I agree with the other mom, if you keep a schedule or consistency, there is less problems with their health. Amber is doing really great ,sometimes I forget she even has it, lol. I do the same thing everyday, from the time she gets up to the time she goes to bed, so that way if soemthing isnt right I will notice it quicker. I have 2 older children 15 and 13, they were tested and they dont have it Thank the Lord. I also didnt even know my hubby and I were carriers, and had no clue about CF.

I'll be praying for you and your family, dont be afraid to ask questions, because there is no dumb question, ok. The more you know the easier it is I promise. God bless!

Quoting BabyGus:

I know exactly how you feel.  My son was diagnosed by the newborn screen when he was 9 days old.  I had no idea I was a CF carrier, and didn't know anything about CF either, but you will learn a lot.  You will need to start going to a CF Care Center and you will meet with about 10 different people who will become you and your sons best friends =)  I think I cried for about 2 weeks straight at first - it was hard to even look at him, I would just see the CF not my perfect little baby (he is my first.)  But I will tell you - even if it doesn't seem like it now - it will get better.  I know something that helps me is to learn to compartmentalize.  I spend an hour a day messing around on CF websites, learning more, talking to others about it, or I just let myself be upset about it and "grieve".  Then I am done and besides taking enzymes before each feeding, doing CTPs, and ADEK vitamins he is my normal little boy.  I have been lucky in the fact that he eats so well and has been gaining weight like crazy.  But on Thursday he started getting a cough and it is making me nervous.  He had a pediatric apt (2 month shots) on Friday and she said he was find it wasn't in his lungs so I probably shouldn't worry about it but I think being a first time mom I am not sure what is CF and what is normal.  Have your other two boys been pretty healthy?  I hope that they don't have CF as well but I am sure it is stressful waiting to find out.  I pray that they don't have it and that your little one stays healthy.  I also pray for you - I think sometimes we parents need the most help with it!  Brady is only 8 weeks (March 10th) so this is very new to me - feel free to e-mail me anytime [e-mail]

[smashlydawn]

My son was dx on October 26th at 2 weeks old. I went through a few days of what felt like a death sentence for him. I must say it hasn't been that bad. The sooner you find out the sooner you get to start treatment and the better their health. Find yourself a CERTIFIED CF CENTER and get in with the pulmo. and everyone and man it gets easier. There's a lot to take in at the beginning and it can be overwhelming, but hopefully your center will be one like mine where they have a psychologist on the team to help you with anything you think you may need help with, along with all the other team members. It's a great thing, IMO. But the most important thing is to find a CF doctor that you trust, that you love, and that you can rely on, don't go to someone if you have any doubt in your mind...You need to be able to feel good that your child goes there.
There is so much to deal with, and take in, but take your time, you have the rest of your lives together and you should expect nothing else. Your son will be able to be just like all the other children, he'll just need extra medical care.
Good luck with everything and if you need anything, don't hesitate to speak up...One of us will always be available!

[PinkChevelle]

hi new mom :) i'm a new CF MOM. my son was born January 1st. i would love to help you out as much as possible..we ALL here for you! please don't be afraid to come to me (or any of us, i hope) with questions.

[beccadarling]

hello CF moms! i first would like to start by saying that i do not have a child  with CF. however there is a 1 in 200 chance that i may due to the fact the i have full blown CF and i am 4 months pregnant!! my fiance is NOT a carrier and i am happy that brought the chanced way down. i am 24 and like i said pregnant. my whole life i was told i would never get pregnant. well  once i got with my fiance i started birth control but it caused too much break through bleeding, so we stuck to spermicides and after two years of being together, i knew hes the one. well im going to have baby now! its good because it is a sign that im healthier then iv ever been!!!!anyway i have lived through the trials and tribulations of this disease and would be happy to be of help to anyone who has questions! im not shy either so you can hit me with what ever you got!!!!~becca

[shelly43]

Hello Becca,

Welcome to our group. I hope that you don't have a CF baby for all the reasons you already know. But I'm glad you decided to join us anyways, lol Feel free to help where ever you want, god knows we all need the help of someone who really knows what it's like.

My son is 9 and doing really well, so if you have any advice on the upcoming teen years feel free to advise away, lol I'm thinking of getting professional help for this but I'm not sure when I should start this really. Any advise?

The other question I would have would be is CF painful for you? They always ask my son this at clinic, but he never admits to pain. Just once and he was getting pnemonia at the time. I often wonder if he is just that tough or so used to the pain that he doesn't realise it. It just a mom thing but I worry about it, lol

God Bless

[mommyjones0608]

Hi there,
I am a CF mom too. I wanted to let you know that I understand how devasting it is to get the news that your new baby has CF. I always wanted to let you  know that CF is not always as bad as it sounds. We found out that our baby had CF when he was about a month old. We started working with his ped because the closest CF clinic is two hours away (he goes there every 3 months). Our son is perfectly healthy. He has had to be treated a couple of time for a bacteria that grows in his lungs that gives him an annoying lil cough. Thats it. Until you have seen a CF doctor and had some gentic counseling dont consider it a life sentence...and dont read too much about it.  A lot of cases are worse than ours I realize that, but I was terrified after I done some reading. Remember God doesntg give us more than we can handle. If you want to talk let me know. I will gladly give you my number. Please keep me posted on how your precious little one is doing. I will be waitog on an update.

[BayouFever]

I have a son who was born on Dec 17, 2007 who has CF.  Like you I have other children and didn't know anything about it until my youngest was born.  Believe it or not, it does get easier.  You get used to the medicines and it becomes a ruitine.  At times you will probably feel like breaking down, but if you just take it one day at a time, you will get through this.  My son was only 6 lbs. when he was born and up until 4 weeks ago was so far off the growth chart they thought he would have to be hospitalized.  We asked his doctor about different types of formula or adding cereal to his milk and it made all the difference in the world.  If your child has problems gaining weight you may want to ask about the Pregestimil formula by Enfamil.  I am new to this myself, but will be happy to help in any way that I can.

[literal2aT]

Hello,

All the posts you have received so far are fantastic and I hope they have helped you.
I would like to add that it will feel surreel for awhile and if you are married, you will each handle it in your own time and very differently. Talk to people. Post anytime you have anyquestions and don't hesitate to call your CF clinic with any questions. Nothing you ask will be considered silly and your life may feel like a roller coaster for the first year. Take things one-step- at a time and don't be too hard on yourself.
The appointments can sometimes be overwhelming and the information given during the first few can be very overwhelming so get information to take with you, I found writing appointments in a book to keep track of mileage is the way that works best for me and in that book I write some of the information that we talked about at the appointment. Then I can revisit it if I need to.

We are here is you need to talk.