I only see a case like your daughters once every 5 years…...

To look at our little sweetie, you wouldn't know there was anything wrong at all, and for that we are blessed. Developmentally she is hitting all her milestones, cute as a button, and talking up a storm. She is quite small (for our family, we are all tall bruisers), with her height and weight in the 50th percentile for her age. I've found out recently, that whilst it's not well documented in the literature, it seems the children with kidney problems do tend to be smaller than one would predict. But surgeons aren't interested in these details and 50th percentile is smack on average, so no one is really willing to talk to me about it.

 Matilda's most recent surgery was in April 2014 in which the surgeon implanted her right uerter into her bladder for the second time. A cystoscopy in March 2014 (where under general anaesthetic they put a video into the urethra to look inside the bladder and up to the kidney) suggested that this ureter was not able to drain into the bladder properly due to blockage by the scar tissue from her first surgery. It was decided to open her up again, cut away the scar tissue and reimplant the uerter.

A simple 1 hour surgery turned into 3 and by the 2 hour mark, I was anxious and pacing wondering what might have gone wrong. The right ureter is not as well formed, and after the surgery the surgeon said it was painstaking work to cut away the scar tissue and free the urerter from the bladder so it could be reimplanted.

He then followed up with, hopefully we'll be able to keep this kidney. I asked him what would happen if this surgery wasn't successful to which he responded "I like to be positive, and I ONLY SEE A CASE LIKE YOUR DAUGHTERS ONCE EVERY 5 YEARS"

This hit me hard - we have been under the surgeon's care since Matilda was 5 weeks old, and only now is he telling me how severe her case is?!?!? We know that renal reflux occurs in 1 in 100 people, so we thought we were in the "regular group."

Nope.

After Matilda had 1/3rd of her right kidney removed at 6months and major reconstructive surgery of her bladder and urethra at 12 months, we thought she'd be fine, that would be it…finito….

People often ask us…. "So she'll be okay now?" and wanting to manage other peoples' concerns I would usually answer "yes."

I want to tell people this is our last surgery, everything will be fine. I find it hard to hear the worry in others voices and see it in their faces. Matilda's siblings are also worried and struggling to understand in their own 5 and 8 year old ways.

But I need to start saying to people "no, we don't know if this is the last surgery, in fact she may still lose her right kidney." We are so conditioned not to make other people feel bad, that it is hard to say the truth.

I know in the long term and in the big picture, my precious girl will be fine. She may lose the right kidney, but she is so lucky to have a fully functioning and normal left kidney. She is also almost fully toilet trained, something that no one guaranteed as she had her urethra reconstructed. Sometimes bladder reconstruction can lead to bladder trauma and the need for lifelong catheterisation.

Often I look at her, deep into those big blue eyes, so open and absorbing and think "what a gift you are."

Hold your loved ones close