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.
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.
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
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
