Cherise in South Africa

[Guest guest]

Welcome to the list. I just want to say that the good news is your

friends little girl can have a happy, long life. It is so important

that she ensure she is near good medical support, specifically

specialists for children in hearing, vision, cardiology, ent, and

pulminary. There might be more but those are the ones I use the most.

The thing that helped me the most in dealing with the early months of

my little girl's arrival was this list, and also the pictures on it.

If you go to " links " and then go to the photo pages of other children

with CHARGE, it gives you a bit of a perspective. While each child is

different with their own set of symptoms, they are all happy children

with lots of opportunity for a long and happy life. You will also

find adults with CHARGE on this list that have given me hope for my

daughter. In the early stages, there is so much unknown, that peeking

into the possibilities of her future by looking at these pictures gave

me the fortitude to move on and know this was all going to be okay.

My daughter got her trach at 3 weeks old and she is now 20 months old

but doing GREAT!!!! We have an excellent ENT who is determined to get

her trach out, and we follow up with him regularly. Carmen is loving,

funny, and fiesty, and so much more than what physicians told me she

would be.

Best of luck to you, your friend, and darling little Cherise.

, mom to Zachary 4.5 years and Carmen 20 months (CHARGE)

>

> Good day,

> I am new in this group and I am from South Africa.

> My best friend,you can call her my sister had a beautifull baby girl

> on the 4th of January.

> Minutes after she was born they discovered she had a breathing

> problem,only to find out she had obstruction in the nose and needed

> an operation,my friend was devastated,how could something so right

> turn into something so wrong?

> 3 weeks later Cherise was still not doing well,she had infection on

> her lungs,only to find out after the third operation she had

> incomplete tissue development between the stomach and the

> lungs,whereafter she got a trache and a tube to the stomach,it is so

> painfull to see this,she looks so healthy from the outside,then the

> doctors realised she could have CHARGE.In South Africa the doctors

> dont know much about this,as this was our first time as well,weve

> heard of anything like this.Her eyes was tested and there is no

> problems.

> Every time my friend went to see Cherise something else was

> wrong:there also seemed to have been a problem with the heart:the

> one artery did not close properly,but the doctors at this stage

> thinks it is minor.Yesterday the reconed she has a growth problem as

> her weight is tghe same as a new born.It is like these doctors in

> South Africa gave up hope on this precious little gift from God.I

> took CHARGE and started searching the web,there is not much,but

> luckily I found this site and is so pleased that we are not alone.All

> my friend wants at this stage is for her baby to get better so she

> can take her home and nurse her there.

> Can somebody please give us advice and information we are desperate.

> Thank you kindly.

>