Anyone else from Australia?

Hirschsprung's Disease
#1

As in the introductions:

Hi I am from Australia and gave birth to my first child, a son named Ryley on 3 October 2006. After 18 hours, he started vomitting bile and still hadn’t passed the mecomium plug. They sent him for an xray and found that he had a blockage in his bowel. HD was suspected immediately, so he was transported to a bigger hospital. At Day 3, his bowel perforated and he had to have emergency surgery to form an ileostomy. It was also discovered that he had HD. He was a low birthweight baby and failed to thrive. He had many bouts of enterocolitis but eventually turned the corner in January last year, and started gaining weight so he could have his pull through op. Although the initial biopsy showed he had SSHD, it was found to be incorrect. The second suspicion was TCHD, but following a second biopsy, it was found he had LSHD. He had 30cm of his large bowel removed in February last year and had his stoma closed in March. He is now going very well, and you wouldn’t know he was ever so very, very ill. He occasionally has problems with excoriation of his bottom, and poos 2-3 times a day, but other than that, he is fine.

I would love to talk to other families of HD kids. Could be from anywhere really, not just from Australia.

#2

Hey sorry to hear of your and your Childs misfortune. My name is Jared and
my daughter Caitlyn had similar problems at birth. She had surgery at
3days to fix a twisted bowel. The doctors had hoped that was the problem
but after further tests they discovered hd. After several weeks we were
able to her home, knowing full well we would be back at some point for
another surgery. At two months she went back for the pull through op. It
all worked out and she is know 2 1/2. She still gets rather bad diaper
rashes and will take longer than normal to be potty trained. All in all I
feel as a parent going through such adversity with my daughter will only
make me a better father. I have learned patience, forgiveness and a love I
never thought possible. If you ever need to talk or perhaps just vent your
frustrations please send me a note. I have seen, it felt and lived it so I
can totally relate.

Later and keep well Jared

-----Original Message-----
From: kristin5 [mailto:hirschsprungs-cpt7514@lists.careplace.com]
Sent: January 18, 2008 5:55 AM
To: jrogers3@cogeco.ca
Subject: [hirschsprungs] Anyone else from Australia?

#3

Hi Jared, Ryley’s story does sound like Caitlyn’s. Does Caitlyn have LSHD too? I ask as I have been told that though it is rarer for girls to have Hirschsprungs, those that do are more likely to have long segment than short segment. Have you started toilet training her? I am looking at getting a potty for Ryley tomorrow, but more to teach him the routine of sitting on it for a little while after every meal - I am not expecting him to actually use it properly yet! And I won’t pressure him, as I don’t want to stress him out. This was just suggested to me as a good way to get them started.
I totally hear you on the level of love - I had no idea I could feel like this. Is Caitlyn your first (and only) child? Do you have a family history of HD?

#4

Hey Kristin it is a rather small world when you have the advantage of the
internet. I have started toilet training but I must admit it has not gone
as well as I would have liked. I first started at about 11/2 years and she
passed stool a few times. But she has sort of regressed as of late. I to
do not want to put any undo pressure on her, after all she has been through
to much already. Yes Caitlyn is my first but hopefully not my last. I did
find the whole situation was to hard for Caitlyn’s mother to handle. She is
a nurse and I think the level of her knowledge on the matter was to much for
both of us. I always believed that everything would work out and that we
should stay positive. She on the other hand, thought the worst would
happen. I suppose two different people with different ways of looking at
life and a beautiful daughter.

Caitlyn has never had a solid movement, perhaps you have some diet and or
meal ideas. I must admit it feels like the only things she likes to eat is
pasta, chicken and grilled cheese. At first I never battled her on it as my
only concern was her gaining weight for her surgeries. I appreciate the
offer to join the support group, but if it is all the same to you this forum
fits me better. I live in Hamilton just outside of Toronto, and have been
to your famous mall on a cross Canada Trip. Thanks for the ear/eyes it is
very nice to be able to express my feeling to somebody that has lived a part
of what Caitlyn and I have been through.

Later Jared

-----Original Message-----
From: kristin5 [mailto:hirschsprungs-cpt7514@lists.careplace.com]
Sent: January 20, 2008 8:36 AM
To: jrogers3@cogeco.ca
Subject: Re: [hirschsprungs] Anyone else from Australia?

#5

I have heard toilet training can be a nightmare, so you are certainly not alone with that!

Ryley does some solid movements, though it is hard to tell in a nappy/diaper sometimes. More often than not they are runny, but he is down to only 2 - 3 a day, which is quite good.

I try and make sure he has some banana every day as that hardens the stool. I have also been trying him with a low fibre diet, to be more constipating. Therefore, most fresh fruit and veg is out! He too likes pasta and chicken and grilled cheese. Maybe it agrees with them and that’s why they like it? The dietician told me that he will automatically cut out things which don’t agree with him, as he will soon realise what makes him feel horrible. They are much more clever than we realise! So they should eat white rice and white bread (not wholegrain), and a cereal which is not high in fibre (Ryley has Rice Bubbles). For some, tomato is out too, though it seems to be ok for Ryley.

I think early on, I was quite negative about the whole experience as well - but then, having just given birth, my hormones were all over the place. My husband was much more positive. But the more I learned and the more questions I asked, and got answered, I felt like I owned the situation again (not so out of control) and felt much better.

And now I wouldn’t have Ryley any other way - he is even more special to me because of what we have been through as a family (though I would have liked to spare him the trauma and pain). He has a gorgeous nature and is such a happy little boy, as well as being very cute of course! I am so proud of him and admire him so much. All of our HD kids are little marvels, I think!

#6

Hi kristin,

I too live in Australia (Tasmania actually). My son is now 8 years old and has LSH up to date has had 22 operations, currently has an ileostomy and leads a normal life with that. We certainly have had our ups and downs, air lifted twice to Melbourne for a necrotic bowel stricture. He plays soccer, swims and does everything a normal 8 year boy does.

Take care

Carolynne