Frightened and sad...

[AllthebestforLiam]

Hello everyone,
we found out a couple of days ago that our unborn son (31 weeks) will very probably have CF. He has had an echogenic bowel since week 24, which is why my husband and I were tested for any CFTR- mutations. I have R1162X, my husband dF508. We were shocked when we found out, and can still not believe this isn't just a bad dream. We are frightened and wondering whether anyone out there can help us cope..
Thank you very much

 

[patpatstoo]

My daughter is 18y/o and was diagnosed at birth with a bowel blockage. She just graduated 13th in her class, rides horses and works in a vet office. She goes into the hospital for a tune up each summer. Life has not been all roses but I wouldn't change a thing!

 

[Ratatosk]

DS was born with a bowel obstruction due to meconium ileus. We had no idea, didn't show up on the ultrasound. He underwent surgery at a children's hospital with a high level NICU. During his recovery we learned about cf -- chest physiotherapy, enzymes, nebulizers. Today he's a busy soon to be 10 year old. He goes to school, is active in sports. Has had one hospitalization since his original surgery at birth, otherwise has remained relatively healthy. Sure it was terrifying. But we took it one day at a time, one step at a time. Questions to ask -- is there a high level NICU available should your son need surgery, he very well could clear his obstruction. Are they monitoring you and him?

 

[AllthebestforLiam]

Thanks for your answers. It is good to know we're not alone with this, that so many other parents have gone through this stage. Still scared as hell..
They said they would do ultrasounds every two weeks to see whether the bowel dilates or not. If so, they said they would fetch him early to operate before the bowel perforates. Although somehow alltogether the bowel issues frighten me less than the lung problems he might (will?) have at some stage...

 

[Ratatosk]

As for the lung issues --- people wcf are born with normal lungs; however, due to the extra thick sticky mucus, possible infections.... over time the lungs will be affected. That's why it's so important to be proactive. We learned how to do chest physiotherapy (CPT), basically patting different areas of the chest, back and sides to keep the lungs clear. We did this 3-4 times a day -- when we woke up, after work and before bed is pretty much our schedule. If you live in the states....a vest system is available which does the work for you -- child has to be a certain size and age.. We were terrified when DS was diagnosed. All we knew was what we'd seen on tv. feared ds would be the lonely sickly child -- no friends, etc. Our doctor introduced us to a teenager who was in the hospital for a tune up (IV antibiotics). She was NORMAL -- went to school, active in sports, had a boyfriend, friends that visited her during her stay.

 

[Kaethe108]

All parents here went through this shock and fear. You found a good place to connect!
there will be rough times coming, no doubt. But there will also be joy and laughter and love! You give birth to a lovely wondefull little child and not to a patient.
CF is not what it used to be anymore! Please be careful what your read on the internet. It might scare you unnecessarely.
Being born in this time with all the new drugs just a few years away, your child has the best circumstances ever to deal with this disease.

 

[Jet]

I'm 50 years old and lead a very happy and productive life despite CF. I’m older than many of my caregivers including my doctor at the CF center. I echo everyone’s comments here. The advances in treatments, drugs and the basic understanding of the disease have come so far since my parents learned of our diagnosis. Start day one with a good CF center. This site is full of knowledgeable people willing to provide feedback, support etc.

Everyone in life faces challenges ours with CF are just different.

 

[Printer]

I am 73 and I go to the Adult CF Clinic At Boston Children's Hospital. I am not even the oldest person who goes to that Clinic.

Things will work out for you and your son. CF is not the same disease that it was, even 10 years ago.

Bill

 

[baco623]

I completely understand that you would be scared right now of an uncertain future but rest assured if your child does have CF you have a wonderful CF community behind you support you through everything. I am 26 years old and have both CF and CFRD (cystic fibrosis related diabetes). I live an exceedingly happy and "normal" life. I'm not going to lie, it has been very very challenging, but much of this is my fault. I have made a lot of mistakes in my CF career and they are mistakes that you don't have to make with your child. If you want to talk on the phone, please private message me and I would love to talk to you. Stay strong, stick together and take things one day at a time.

 

[BLKC032209]

Our son is currently hospitalized with complications from CF, meconium ileus, and tracheomalacia. He just turned 11 weeks old last week. The "whole bowel" issue was scary, but his breathing issues far outweigh that. Read all you can, ask all. You can, and make sure your hospital is an accredited CF Center. Our 4 year old daughter is growing, happy, & fairly healthy as she, too, copes with CF.

 

[scm1226]

My daughter is 16 months old. She is a typical 16 month old, although might be the cutest. She spent 10 days in the hospital due to pneumonia in April. It was hard but you learn to adjust. She was put on the vest and we just have to make sure keep up with her treatments. She is a tough kid and your child will be too. With everything that is happening with the medicines now we have faith that she will live a long healthy life. You can and will do this and your child will have ups and downs but they will be OK.find a certified cf center and hopefully you get a doc you can trust. We are lucky we have three cf centers all within driving range. We picked the furthest 45 mins, because the Dr was fantastic. Meet with the cf Dr now. Goodluck and iI am sending positive thoughts your way.

 

[JENNYC]

HI!! I just wanted to say that in time things will get better. I remember my first year very clearly...it was so scary and there was something new I had to learn and adjust to every time I turned around. I was hurt, mad, afraid and just down right confused and struggling. Now...I am a confident and proud mama!! You will tackle this...it's not going to be a walk in the park and it will be an emotional roller coaster..but it is very worth it! You have a beautiful very strong little man. God makes CF kids to be so strong. He will amaze you!! You will become a CF expert in no time and every thing will just become routine. And the scientist are so very close to helping our babies!! Keep your chin up and write often. The more you let it out the better!! God bless and congratulations on your precious little man!!

 

[AllthebestforLiam]

Thank you all so much for your answeres. I appreciate your experiences and good wishes very much, and they have helped me deal with this situation. I'm still afraid of what it will be like, but we're trying to be optimistic that it will all work out somehow. Thank you again, everyone.

 

[healthypeanut]

The First Year

I have a little one with DDf508 who just celebrated her first birthday. She is a happy busy bee who is always on the move. She is an average weight and just below average height. She does enzymes at every meal, vitamins once a day and chest PT once a day. She's had to use the nebulizer for two colds - one over the summer and one in the spring. She doesn't mind it at all and sings to herself when the mask is on.

We didn't know about the CF until after she was born. It was scary and upsetting, especially when you go online and begin reading everything you can! Try to only read peer-reviewed articles - those are the ones verified by doctors. Otherwise you will just get consumed with the various stories that are out there.

Anyway, it is ok to be nervous, sad, mad, excited, happy, confused, and hopeful about the new baby that will be entering your life. Let yourself feel all of these emotions. I still cry sometimes and that's ok.

It's ok to worry and cry.
But don't let these feelings consume you.

You are going to be an awesome parent and you will handle everything to the best of your ability.
Take things one day at a time and get a good CF doctor that you feel comfortable with. Make sure he/she works well with your local pediatrician.

If you want any advice about the specifics for newborn care, please private message me.

Good luck and hang in there

 

[KateLarge]

Please be reassured! Your child has exactly the same gene combo as our daughter, it's quite rare so I would love you to keep in touch. I know I can't say your child will be same as ours, as each person is completely individual, but our daughter is SO well. Her chest damage x ray score is zero, she takes a low dose of Creon, and very few meds. I do also know a pair of sisters in the US with the same genes who are in their 20s and well too. Our daughter has no cough, wheeze, is just off the 91st centile for weight and height, and is such a lively kid! She runs and plays all day! Yes,there are people for whom CF is a terrible sentence, but with the new babies born, they treat them so early that they get the very best help right away. Of course you need time to grieve and express your fears but please don't feel your child has no future. I. Felt just the same when Little F was diagnosed, but in the two years she has been here,she has astonished me every day and she astonishes everyone else who knows her! You are right to take CF seriously but please don't let it take away the joy of your new child. Congrats on your imminent arrival and be assured too that the docs are very experienced in bowel surgery for tiny CF bubs, it's quite common. I think you should expect lung problems of at least some sort in the course of his life but these may be very mild, and very far off. Just know your baby is in good hands and CAN and WILL have a great life. There may be some bumps on the road, but any child can have problems of some kind. I was devastated when we got the diagnosis and even questioned why I had had a child... But I can now say she has been a joy to have, and the medical stuff just becomes routine very quickly. My husband even tried to feed me Creon the other evening! There is a great network of CF parents who have seen and done it all. When you feel able to, try using different forums and Facebook as there are a lot of us out there. Lots of love from our little genetic 'twin' to yours. Feel free to contact me direct xx

 

[CrisDopher]

I do think it's amazing they can detect the problems in the womb, test you and your husband, and get a diagnosis before the little guy's even born. What an advantage! You and your team of physicians have time to think, time to prepare. Soak up information; make CF friends. Try not to compare yourself to the unfortunate parents whose children were not diagnosed until later in life, spending years wondering why their kid was so sick all the time and going to pediatrician after pediatrician only to get no clear answers. You'll eventually meet those kind of parents, of course. Try not to lord it over them that you had a head start on tackling this.

 

[CureCF4Teo]

I could write a book on this, like many people involved with cf could! I can give you this little bit of insight though - trust me, after awhile, this will come to you like brushing your teeth everyday does. You just learn to do it and it becomes a normal part of your life. Yes, its very scary and overwhelming in the beginning. But you will get through it, believe me. Make sure you stay connected to a support group such as this when things come up that frighten you, I did that and it made all the difference in the first couple years....till I felt comfortable enough to handle things like a champ when they came up! My 11year old son was born with the meconium ileus, born a month early cuz of it, 16hr surgery right after being born and it didn't stop there - there were many more surgeries that arised for him in the ensuing years....the worse one probably being the g-tube placement. I despised that! But, after consulting with the support groups, I learned they were right - it saved my sons weight issues and I have grown to appreciate that little button! It will be a twisting, turning adventure down medical lane, but you can do it. Be strong. P.S. they grow up to be beautiful .... cf is one of those diseases that does not get enough awareness cause it doesn't wear its ugly face on the outside, so people cant believe majority of the time that your child has anything going on with them! But you will know, because you will be the one doing all the care that says "oh yes, this is very real". (((hugz)))

 

[LisaGreene]

It is hard finding out about things like this but the "silver lining" is that you will be carefully watched and taken care of. My son (with CF) had the same thing when I was pregnant 14 years ago now. He was born via C-section. Today, he is a healthy, well-adjusted, spunky teenager who is good at school, sports, and about to become an Eagle Scout. No, it's not easy. Yes, you can do it. Big hugs, Lisa

 

[AllthebestforLiam]

Hello again. Here's a quick update on my original post, and some more questions..
Liam was born 10 days ago and so far he's doing fine. He luckily didn't have any Meconium problems, and has been having 3-5 rather noisy bowel movements per day. The stool is yellow, somewhat slimy and does not smell foul. He lost his allowed 10% of his birth weight after he was born, and has been gaining weight since then, although rather slowly. He had slight jaundice, which hasn't quite disappeared yet. And apart from these medical facts he is the sweetest baby ever..
We are still waiting for the results of his genetic testing. We have just got the result of the newborn screening (IRT), which was slightly elevated (they didn't tell us the exact value).
Does anyone have experience with IRT results? Would CF patients have only slightly elevated IRT-values, or would the values be much higher than normal? Could it still be possible that he is only a carrier - can carriers have slightly elevated IRT values as well?
Thank you for your experience!

 

[Aboveallislove]

I'm sorry I don't know the answer but was wondering if they were doing a sweat test and also how long before you know on other tests.