babygirl born with imperforate anus......complicaions after surgery....can't find any answers :(

[sugarbea]

my baby girl was born in december with an imperforate anus with a vestibular fistula.. she avoided a colostomy and had a psrap (pull thru at 2 months old)......since then she has had around 6 IUA (investigation under anasthetic) and dialatations.....(i have not had to dialate at home) at the last IUA they discovered a rectovaginal fistula (which i think has been present for a while as i had noticed poo in that region before) she is due for more major surgery in august....she will be 9 months old....

i have tried for months to make sense of it all and it is no comfort that all the things that have happened to her have (in the doctors words) "just been one of those things"... it makes an otherwise positive mum question just how many more things can happen without cause or explanation.

wikipedia is my enemy....as the condition is so rare the information that i have found on it differs so greatly im still none the wiser...

im scared for her future, her continence, her happiness she on the other hand couldnt give a monkeys..... she is the happiest baby ive ever known...surpassing all her milestones (crawling at 5 months standing at 7) shes determined to make up for any abnormalities.

wondering if any other mums have a child with this condition or any mums that were born with it.....im sick of the statistics...

[maxmissie]

haven't got any experience of the condition your dd has but didn't want to read and run - my nearly one yr old ds has an unexplained lump on his brain which is currently under investigation and which doesn't affect him on a daily basis,

but it is so hard not knowing what the lump is, why it is there, what might have to happen in the future - it makes me so angry that such babies have to go through such horrible things when they are so young and which are unexplained.

He is so resilient though and it sounds like your dd is the same. It is hard to focus on the positives sometimes when all you do is worry about the negatives but it sounds like she is doing really well.

Hope the surgery goes OK.
xx

[autodidact]

She sounds so very lovely and really clever and happy, sugarbea.

How worrying and stressful for you, though. Have you tried phoning Contact a Family? They give advice on rare conditions, I think, and sometimes put families in touch with each other when their children have the same condition.

Best of luck for the operation in August.

[meltedmarsbars]

You could try posting on the SN board - parents there may know of someone with a similar conditon? There are many friendly voices there.

Alternatively, as autodidact says, Contact A Family is an organisation to help and support families who's children have a huge range of problems - it may be worth looking there.

Just remember that continence IS something that can be managed and lived with - your dd is obviously a lively happy child, so enjoy her while she is little - the baby months fly by!

[gordonpym]

When I can't find the answer on MN, I go to this Health Forum in NZ. www2.everybody.co.nz/forum/ubbthreads.php?ubb=cfrm.
Hugs

[cleverlyconcealed]

sugarbea - I've posted on yur other thread and bumped the Stoma thread. There's definitely a couple of mum'son there whose children ghave imperforate anus. Hope you find some support.

[PurpleLostPrincess]

Oh sugarbea, big big hugs, I totally know what you're going through - please do come to the stoma thread and have a read through our experiences. I remember searching for hours on end, trying to find information and when I came across people who had been in the same position, it was such a relief!!!

DD2 (Cerys), was born with an imperforate anus and also had a rectofestibular fistula. She unfortunately had a colostomy and psarp but had her reversal at 6 months old. She had emergency heart surgery at 9 weeks old too and it was honestly the most scary time of my life!!

She is a very happy toddler now and will be 3 in September. We still have lots of things to deal with, which you'll read on the stoma thread, but I want you to know that there is hope and that you WILL get through it. There are people out there who know what we're going through. I strongly recommend the Extra Special Parents site, it too has been a lifesaver for me. Feel free to look up Cerys's story on there too.

See you on the stoma thread hopefully!

xx PLP xx