This is story of my journey with complex cloacal anomaly.
When it started I couldn’t find any or enough information about it. Especially in non medical language, that I could understand. It’s very personal but decide to share my story to help others.
To all parents who are on the begining of the journey.
You are not alone.
There are people who went trough similar way and understand how you might feel.
I’m one of them.
I’m S’s. mum.
That’s not my name. That’s who I am. my 24/7 job, my identity.
It wasnt easy to get over the shock and be able to talk about S. condition, but within time I realized I want to share my story and hope it will help someone who’s feeling lost and lonley as I did for so many months.
For the first 7 months of S. life, it felt as we walked in the fog, thinking we are the only people in the world with a complex cloacal anomaly baby and that no one knew or understood how it is. I thought so cos I never met any other parents of cloaca kids. In fact I never even heard about it. I couldn’t find much information about it and even when I did, it was just a bunch of dry facts. No real people behind, no real person who could say:
S. will have a life. A normal life. It’s going to be ok.
or at least: “I know how it is to live with that, or what to do when you come across some problems”. I mean some “silly” stuff like how to treat skin under a stoma bag when its red raw, or is it normal for mucus fistula to be leaking or what is the best way of putting a stoma bag on or what to do when a vaginostomy tube slides out or… etc.etc. Basicaly little problems or I should say bumps on the road to making sure our little girl is getting the best care and daily care – without having to call the surgon or nurse each time we didnt know what to do or when we didnt know if its normal.
Here is our story.
S. was born at 33wks through emergency c section in Aug 2012 with complex Cloacal Anomaly (1 single common channel – urethra, vagina and Imperforate anus not known until after birth).
What a day it was… I was in work that morning, feeling great. My Water broke, but I didnt know about it – found out in hospital that baby is on the way, but there is some problem. On the scan it shows that babys abdomen is swelled up and Docs suspect some cyst on the bowel. It was much too large for a normal labour birth as baby would get stuck in the birth canal and we both would die… So, a quick decision about c section and 3 hours later S. was here.
We only got to see her for a sec and she was taken away to Temple Street Children University Hospital where she fight for life (and where we spent nearly 2 months by her side untill she was better). For about 5 days we didn’t know if she will make it.
Within 12 hours of her birth she had her first surgery. Docs had to clear her tiny body from all the crap that had not passed through her in the normal way (she was swelled up so much she looked like basketball), from a birth weight of 3,2 kg it turned out she was only 1,9kg.
At that stage She had done the colonostomy and vaginostomy.
S. did have one opening down below. She could pass wee but her bladder wasnt empting propely. She had her colostomy done and vaginostomy tube above, so we could catheterize her (to take the preasure off the bladder).
For the first 2 weeks she was in Intensive Care, and after that she was moved to neonatology ward where we fight for every gram – so she could gain a bit of weight to leave hospital.
Finaly the day had come, and we could take our precious girl home.
We will never be thankfull enough to all wonderfull staff who gave us such huge support. All training – how to look after stoma and catheter, or even how to bath S. but also support and a big push not to give up and breastfeed S. as it was the best and easiest way to get her stronger (BM was easier for her to digest than any formula) and also advice on social support matters.
S. had reconstructive surgery at 7 months old, in march 2013, in Leicester Royal Infirmary.
We were so blessed and lucky to get it done so fast, at such a young age.
The day of surgery was the longest day of my life so far. Surgery took 13 hours. Somwhere inside I was calm as I knew S. is in the best hands and everything was going to be alright but at the same time… Since she was born every day was filled with caring for her: changing or empting stoma bag or releasing air from it, empting catheter, changing nappy every hour, feeding, etc. Suddenly I had none of it to do. What to do??
I read full book, went shopping and then to cinema (and cant remember a single minute of any of those), went for a mass, and just when I left the church I got msg that surgery is over. Thank God cos I didnt have a clue what else can I do to kill time.
Surgery went well. Thats what the doc said. All I could see was my poor lil girl unconcious, drugged and puffy, plugged to monitors and pumps. She looked terrible but she was alive, and this surgery was a „ pass to a better future”. S. needed her colostomy switched to ileostomy 3 days later. But after that she recovered and within about 3 weeks she smiled again and got better day after day. With great support and help from all the wonderfull staff of Ward 10 we were able to take our baby girl home 5 weeks after surgery. She had her ileostomy reversal in August 2013.
Couldnt believe it and I cried when I saw her first dirty nappy.
Something so obvious and natural to most parents – a long waited miracle for us.
Since then we faught with constant nappy rash (we found a way to treat it but it keeps coming back every few days) as her skin around the bum was not used to the acids passed from her bowel in the poo the way an average babys skin would be by this age. and shes on antibiotics to protect her kidneys. S. is incontinent with her wee, her bladder doesn’t empty properly and she also suffers repeated UTI’s. Since Christmas 2013 we are doing CIC and helping her bladder to empty. Apparently for her age she shouldnt have more thant 50 mls in it, and we drain each time ( 3-4 times daily) from 80 to 150 mls (record at one go was 230 mls ).
S. is always a smiling happy girl. It amazes me how she stays so cheerfull and happy after all she went trough since birth. She is the most active, curious, cheeky and beautiful little girl we could ever wish to know. And back at the start of this story, if you told me ”that”, I would have cried. I wouldn’t be able to believe it. Impossible. But here she is!
That’s our story so far.
It took me 7 months to get my head around this, and another 2 to be able to talk to friends about S’s. condition. And a few more to come to the decision that I’d like to share our story with others. I remember long days and nights while waiting for S’s recovery. One of the nights I decided I had to do something. Something to make everything we have been trought more than just a memory. It had to make a difference to the next parents that feel like this. To try to give them some of the help and support that we received from all these wonderfull people.
I hope this project will help other parents like us to understand and deal with whats happening in their and their childs life when faced with cloaca.
Its been tough, and I know theres tougher to come, as of yet we dont know if S. is going to be continent or incontinence. I’m scared what the future is going to be like.
For months I was scared, depressed and wondered if S. will have a “normal”life.
Im trying to stay positive. Especialy when I realize where we were a year ago. Last year at this time S. wouldnt even roll over on her belly as all the bags were stopping her, we couldnt imagine her without the stoma, and catheter and always stressing about the coming surgeries, couldn’t see beyond that.
Now shes is a very independent, bright girl whos starting to walk. Smiling all the time and who gives us joy every day.
What the future is holding for us, what S’s life is going to be like? I guess time will tell. But for sure I’ll do anything to make it happen. For S. to have a NORMAL life LIKE ANY OTHER GIRL.
To make my lil girl happy in who she is and what she has overcome.
Dublin April 2014