Little Leakers
Meet Clody
Hi,
My baby daughter Clody Jane was born on the 21st of July 2008 in
The Coombe Hospital, Dublin Ireland. She was very sick when she
was born and transferred to Our Lady's Hospital Crumlin for sick
Children. Clody is my third child, I have two other children, Kelly aged
11 and Joshua aged 6. We did not get Clody's diagnosis straight
away and we where in hospital for over 3 months before Prof Tim
Bohane eventually diagnosed Congenital Intestinal
Lymphangiectasia. She had extremely low levels of albumin, and
massive amounts of fluid in her body as well as skin odemas. At her
worst Clody had an albumin level of just 13 and she was extremely
weak, we did not know at this stage what was wrong and the doctors
had told us to prepare for the worst, but my strong little girl came
through it. She has severe diarrhoea and was very, very sick. We
had know when we where pregnant that there was something wrong
but we never thought it would be as bad as this. Clody had to have
several operations as well as several procedures to release the fluid
and was on tpn feeding for a long time - she got blood sepsis from
the tpn several times as her IGG levels where so low and she picked
up allot of infections in hospital including the rota virus. She also
spent time in ICU after her laparotomy because she was so sick.
All the way through this she has been such a little fighter, she always
smiles and considering everything she is going through she very
seldom cries. She is such a little inspiration to us, every time I look at
her I feel proud for the little person that she is.
She is now 7 months old and we have been home for nearly 8 weeks with
her, she is doing allot better - the diarrhoea is still very bad and she still has
allot of fluid in her body - though its allot better than it was - we have her on
allot of mediations to control the fluid as well as modular feeds that contain
no LCT Fats at all. She is only allowed to have MCT fats at the moment.

I am feeding her every 3 hrs during the day and night as she can only fit in
small volumes due to the fluid in her body, she suffers from skin rashes and
her first teeth have come up black. The doctors think she has a vitamin
deficiency due to malabsorption of vitamins. She also sweats profusely and
we are awaiting test results for both of these.
We try her every so often with spoon feeding of just fruit but she vomits it
straight back up most times or else as your feeding her it just come straight
out the other end, she also can suffer from bouts of pain while or just after
eating. Sometimes she can vomit in excess of 4 times a day after feeding.
She has her good days and her bad. She suffers from stomach cramps and can
have bouts of crying and I just know she is in pain - once I give her pain meds she
calms down. Prof Bohane and his team have been marvellous helping us through
this really tough time.

The hospital are constantly monitoring her condition and see her on a week to week
basis.

I am very worried for the future for my little girl, while we have seen an improvement
she can have really tough days, I am wondering if there is anyone else out there
that has a baby with this condition that can chat to me by email and share their
stories.

Thanks,
Sue                        
suemonahan@eircom.net