not sure if i should post here?

[Scottish Sam]

Hi

not really sure if i should post here
I am mummy to Rebecca who was diagnosed with persistant cloaca, small hole in her heart, abnormal looking spinal cord and small issues with her kidneys( thought one was split when she was born)

https://en.wikipedia.org/wiki/Persistent_cloaca

basically she only has one opening when she should have 3. she has a stoma at the moment but is due to have a big op on the 22nd may to create an opening for her bum and girly parts then a couple of months after that she will get the stoma reversed and have her first dirty nappy

so far they are not concerned with her heart as long as the hole remains small and we got great news yesterday about her kidneys, they seem to be working the way they should and both are whole!!

so no idea what the future holds in terms of developmet due to the spinal cord thing, just really scared she wont be able to walk but have been told ther is no reason for that to be the case

sorry! just realised i have rambled on a bit!!!!!!

 

[Emmea12uk]

Hi!

Yes of course you should post this here! I have never come across this before but i am totally familiar with bladder and bowel problems, and even spinal problems.

My son has spina bifida, and we never knew whether he would walk or not - but today he took his first steps independently, despite only learning to crawl after nine months. I know exactly how you feel with your developmental fears. I nearly cried, and in fact would have had i of not been with a consultant today - i never thought i'd see the day he would take a few steps!

Tom has to have 2 operations on his bladder when he is four, and he will probably require more on his bowels when he is older too. I have no idea what the future will hold in terms of continance, but the older he gets, the more conficent i am about his development.

What is the problem with her spinal cord? Even if she never walks, that doesnt mean she wont leave a long, eventful and happy life! But i am sure she will if they can see no reason why not.

If you want to chat, then pm me.

 

[Scottish Sam]

Thank you for replying

Im scared about her continance when she gets older too

Her spinal cord looks to be a bit shorter than it should be and she also doesnt have a tailbone, and because of this she has this little crease ubove and to the left of her bum so looks like she has a crease in her skin. The consultant doesnt think that this will affect her walking etc but i'm her mum so I'm going to worry!! she is very strong though and is able to sit with hardly any support and can hold her own weight and can stand with little support too.
They are more concerned that her spinal cord gets becomes tethered and so far it hasnt and looks like she will have to get MRI scans every 6 months to keep an eye on it.


Thats amazing about Tom walking today, I'm actually tearing up, you must be so relieved that you now know that he can do it

 

[Emmea12uk]

Dont be scared of incontinance - there are a lot of things they can do, and the worse come to the worse, the stomas and things are very discrete and easy to manage. Children today are so aware of disabilities and accepting, you can't see a children's program on tv that doesnt have disabled children in.

I manage tom's bladder with three hourly catheters, which he will have to do himself one day. They are very discrete and he can go into a toilet cubicle, pop one in, empty his bladder, bin it and go. No one need know. They are tiny little tubes. His bladder is managed with meds and enemas, which are no where near as bad as you'd think!

It sounds like she is doing excellently already! I have spent the last 9 and a half months fretting that he will never crawl, or walk and he just did it one day...i would put it to the back of your mind until you actually see something worth worrying about - 6 months is still very early and although some babies are crawling soon, not all babies without difficulties do. Some children don't walk until gone 18 months and never crawl!

Every baby is so unique and will do what they want, when they want. Let them do their own thing and try not to worry. If she never walks, she will be a very happy child - a friend of mine has a 4 year old in a wheelchair about to start school - and all the other kids think the chair is cool and want to play with it.

I know it is easier said than done - I have a friend who gives me a virtual slap every time i start fretting which really helps!!

continant, incontinant, walking or not, she will be happy whatever if you are a fantastic mummy!

As for the teathering - that is something we have to watch out for too...it is a worry but if you massage the area with oil everyday, the increased bloodsupply can really help!

What makes her spine short?

 

[stephwiggy]

hi ladies - hope u dont mind me posting here - but i have a tethered cord and bladder issues (i self cath) and am able to continue normally and am a mum of 1 and ttc number 2 !!

anyways just wanted to say hi xx

 

[Emmea12uk]

THank you steph!! I have alwas wondered, how easy it is to self cath as a woman?? Do you remember how old you were when you learnt??

 

[stephwiggy]

it was only afew years ago !! befor ethen u used pads etc as didnt have emptying issure just leaking issues !! but now have emptying issues

to self cath as a woman !! its not too bad and i can pee standing up !!! its not unconfortable and after a few week sis very easy and you kinda do it in auto mode - altho i am as anyone who uses cath quite prone to water infections - from talking to my urology nurse girls tend to be about 8-12 when they can self cath and boys can be much much younger !!!

 

[jojo2605]

Hi Scottish Sam, I know this is an old post but I see your daughter was diagnosed with cloaca - my son has an imperforate anus and I would be interested to hear how things are going for you at the moment? X X

 

[Scottish Sam]

hi ladies - hope u dont mind me posting here - but i have a tethered cord and bladder issues (i self cath) and am able to continue normally and am a mum of 1 and ttc number 2 !!

anyways just wanted to say hi xx

Thats very reasurring, thank you