Baby Stoma - Advice & support needed for a scared mum

[veryworriedmummy]

My 11 week old DD is due to have the first of three operations in January. The first operation is to form a colosomy. The second is for reconstruction, the third is for the colostomy reversal. Each op is spread about 2 months apart.

Have any other mums gone through anything similar. How much will it effect her/our lives? Can I still handle her normally, carry her in a wrap carrier/sling etc?

I'm basically terrified by what's to come. It's always there in the background to the point where I have given up trying to stop myself from thinking about it. I'm dreading seeing her suffer and go through these procedures. Seeing her going under the anesthetic and being wheeled off. Not being able to BF her for days as she goers nil by mouth, not being able to co-sleep with her. Leaving my toddler for days at a time. My biggest fear is that something will go wrong and I might loose her.

I know I have no choice but to try and get through this but as the time draws closer, It seems impossible.

[mymatemax]

Hi my friends ds had a stoma & then reversal 6mths later following emergency surgery for a perforated bowel.
He sailed through the operations, coped with the stoma very well. The only thing she struggled with was keeping the little bag stuck on the outside. The stoma nurse was great & able to give them all sorts of support & ideas etc.
It certainly did not effect how she held him or hold back his development at all.
He is 4 now & has no long lasting effects.

I hope all goes well for your dd

[dinny]

oh, VWM, I really feel for you, what a worry. ds had to have surgery when 11 months - for a perianal abscess and it was only one op but I so know how you feel. have you got support around you - grandparents etc? as you mentioned, the nil by mouth is really hard, though I did co-sleep with ds in hospital, actually...

and yes, when they go under GA it is excrutiating but all the surgeons, anaethetists working with children are so skilled and experienced, she'll be in safe hands.

can you talk over your fears with your practice nurse maybe? or GP?

thinking of you, Dinny

[PurpleLostPrincess]

I'm so sorry I missed this one, I know you posted it a while ago but incase you're still on mn I just wanted to offer you a virtual hug. My DD2 was born with an imperforate anus and had a colostomy at 3 days old, then emergency heart surgery at 9 weeks old, then a PSARP (reconstruction of her bottom) at 14 weeks, then her reversal at 6 months old. She is now 13 months and is a lovely happy bouncing bundle of smiles. I really feel for you as I went through all the same fears etc. How are things now? Has she had her reversal yet? We were in Southampton and they are fab.

Also, there's a site called Extra Special Parents which was started by a mum whose little girl was born with the same condition as my DD2 and it offers invaluable support for parents going through all sorts of things. Well worth going there if you haven't already.

Hope all is going OK with you and DD xxxx

[PurpleLostPrincess]

Just thought I'd see if you're on mn and how you are?

[ilovechocolate80]

Hello

I was the OP years and years ago and indeed a 'veryworriedmummy'. I just wanted to leave a final update for any worried mums/dad/aunties/granny's of babies with this condition who come across this thread.

My daughter is now 8 and is perfectly happy and healthy and has a full and active life. She has a little clean up bag at school for her own use, which she uses less and less every year. I give her Lepicol - a totally natural product, lots of fruit veg and water, prompt her to go to the loo every evening and that's pretty much it in terms of her care. All that I worried about when she was small - being bullied at school, more surgery, a life on medication, etc - never came to pass and you would struggle to meet a happier more confident child. The best thing I ever did for my daughter was play down her condition and stop fussing about it, give it time to fix itself more as she grew. I did that in enough time for her to grow up not making a big deal about it. So if anyone pppp
ever comes on here with a tiny baby, worried sick about what lays ahead for them - just have faith that it will all be OK. Dealing with stuff like this give you an extra bond with your child that lasts for life. It can teach you to be strong and philosophical. You and your baby will get through it all together and you will be beyond proud of your wonderful child. Be strong and be happy. :) x

[ilovechocolate80]

This thread used to be massive with loads of contributions from other mums - many saying that it gave them huge support and reassurance. Such a shame it's all gone :(