Meconium Ileus

[anonymous]

Just wanting to know if anyone has ever heard of 2 children being born w/cf and both having Meconium Ileus in the one family??

Am due with 2nd daughter 11 March, my daughter Taylor who will be 3 soon was born with Meconium Ileus and I am terrified as I am nearing the end that bub will be born with it as well. In Australia statistics say 20% are born with it that have delta F 508, have had fortnightly ultrasounds throughout last half of pregnancy and her bowel seems to change - don't ask me how...why... this is only going on what the Professor has told me.

Laura

 

[NoDayButToday]

Hi Laura.

Is it confirmed that your second daughter has CF? I wasn't sure of that when I read your post.

Here in the US, 10% of CF babies are born with meconium ileus. However, once you have had one baby with meconium ileus, the likelihood of your second CF baby having meconium ileus rises to 30%. I'm not sure why this is, but studies have shown that. I hope I sort of answered your question

Congratulations on your impending arrival! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I have twins(not identical) and they both had meconium Ileous. One had to have an Ileostomy and the other twin, they got hers out with enemas and washes.

 

[anonymous]

Also with my twins I had at least 2 ultrasounds each month because of being high risk with twins, and they never saw the obstructed bowel on either one of them.

 

[anonymous]

HI anonymous with twins. Congrats double the trouble I heard. Anyway, just wanted to know cause my daughter was born with meconium ileus, how long did they wait before giving her and lleostomy? My daughter went two weeks, how about your other baby, when did she pass her poop? hehe anyway
thanks for your time

 

[anonymous]

She got her Ileostomy at 3 days old. She got it closed at 3 months!! YAY, those are a pain!!! My other one~ they got hers out, um, I would guess about a few days after my others surgery. We were on top of the world when that happened! Does your baby have it also? If you dont mind me asking. Have they saw anything on ultrasound?

 

[anonymous]

Hi twins!! We were very lucky, the doctors were very persistent in flushing her bowels from both ends. They didn't want to give her any kind of surgery till absolutely neccesary. It was touch and go for a while. I'm a nurse of geriatrics and know all to well of lleostomies, so I was very happy to wait for two weeks. It was tough because they wouldn't feed her until she passed it, she was only getting vitamins and electrolytes. Luckly she was born 8lbs13oz so she was big and had some fat to sustain her for awhile. Hurray!!! your right congrats on the closing of the lleostomy that is great. It is pretty gross and scary at times. I'm surprised they rushed into it that quickly. How did she handle it? Alot of people I speak to say the same that the docs did it within the first week. Mostly Americans, my daughter was at Sick Kids in T.O. Ontario, I wonder if their is some link? Anyway, you must be very proud of your little ones. How old are they now? My daughter is five and she takes creons for her digestion and ventillin puffer when she has a cold, how about yours? anyway, take care talk to you soon.

 

[anonymous]

hI TWINS, sorry forgot to say NO they didn't see anything on the utrasound and my daughter was lucky they happened to have a great pediatrician on call at the hospital that recognized her barrel like belly and put two and two together. She told me within one hour that it was most likely CF. WOW! what a shock. How did you feel when you found out? I chose to become a single parent so without knowing what was in store for me it was tough at first. Now I have a four year old son as well so I can imagine how hard it must be with twins. I went to the sperm bank when my daughter was six mths old, I couldn't the thought of having my only child die at a young age. At the time they said 25 to 30 years no guarantees. Anyway I can really babble hey! hehe take care

 

[LLaws]

Yes baby has been confirmed as having CF had a CVS at 11 weeks results were in less than a week later.

Taylor was found to have MI at 2 days old - we didn't know CF existed at that stage, she was operated on at 3 days old and were then told it is a major symptom of CF.
I don't understand how stats can vary from country to country.
Taylor's CF/Respiratory specialist doesn't seem too concerned that this bub will have MI, he actually believes she won't have it. I have learnt to not get my hopes up, but am always being told that they have not come across 2 cfers born with mi in 1 family.
Thank you for everyones replies!!

Much appreciated
Laura

 

[LLaws]

Twins....,
Can I ask are you're twins different with their severities of CF...besides the MI at birth?

 

[anonymous]

Sure, well they are only 4 1/2 months old so I really cant tell a whole lot yet. My baby that had the surgery has had no lung issues or coughing yet. My baby that didnt have surgery has had pnemonia since December and has not been able to get rid of it and on top of that she just got a cold. They have both had reflux, severe when they were newborns, but the one with no surgery had it alot worse also. So I guess I would rather her of had the surgery to if she had less lung issues!! LOL, I know it does not always happen that way! But either way they are precious and I just love them so much! They are overall pretty healthy and gaining weight like champs.

Take care<img src="i/expressions/face-icon-small-happy.gif" border="0">:brokenheart

 

[anonymous]

Hi Laura,
I have 2 daughters both born with CF and both born with meconium ileus. We live in Ontario, Canada. The girls have Delta F508 & G542X (I think that one has something to do with the MI).

My first daughters MI was flushed out within a week while she was in the NICU. My second daughter's flushings were unsuccessful and she required surgery at 5 days old and was given a temporary ileostomy which was reversed when she was 3 months old and the required 11 lbs. Yes, it was a relief to get that off!

Laura, you never know how the MI will turn out. Both my girls presented with an echogenic bowel on their ultrasounds and with my second pregnancy (where the MI seemed to be worse), I was measuring way ahead for my dates. At 33 weeks I was measuring 40 weeks, etc. I had high amounts of amniotic fluid due to the MI in my second daughter.

Laura, both my girls are extremely well despite their CF and they are now 4 years old and 2 years old. Everything will work out okay in the end. You new baby will be beautiful. Try to look forward to the excitement of your new baby. You will find the strength to deal with whatever may come with him or her.

Wishing you well in your last few weeks of pregnancy.

Good luck and keep us posted.

 

[anonymous]

Hi in Ontario, Canada. I too live in Ontario, do you mind sharing what city? I find it hard to compare some things with the families from elsewhere, they have such different ways medically and financially. Like I would really be interested in that vest, for my five year old, but wouldn't even know how to get a hold of one here in Canada. Any ideas? My daughter too, has limited problems, mainly digestive and thats it. take care

 

[anonymous]

Hi to another Ontarian!

We live in Hamilton and go to the CF clinic at McMaster Children's Hospital.

I would be happy if you want to talk more and compare notes. How old are your children? Where do you live?

As for the vest, I haven't heard of it being available here. My 4 year olds doctor says she is ready to start PEP in place of her CPT. She is to learn the techniques from the physiotherapist at our next clinic appointment in April.

Here's my e-mail address: bianchin_strong@hotmail.com

Please put CF somewhere in the subject so I don't delete you by mistake.

Tammy

 

[LLaws]

Thank you Ontario, Canada for your very supportive message, I have been trying to find out as much as I can about the differences in siblings born with MI that I had overlooked the fact that I am going to be a Mum again and I should be enjoying that.
I'm still anxious though and I gather that is normal, I know everything will turn out alright it is always the initial shock that gets me.

Thank you again, I have 6 days until I am due and I can't wait to see my little girl.
Taylor and bub (Kirstyn) both have DF508. Apparently in Australia MI is most common DF508.

Laura