Sunday, 16 January 2011

5 Year Shunt Anniversary and One Special Angel

Today is Violet’s 5 year Shunt Anniversary! Thankfully, another year has passed without the need of a shunt revision. As you all know this is something we do not take lightly.

You only have to read about yet another tragic loss, to see how serious this can be:

To me July 6th is normally a day for celebration for me, as it is my birthday but this day in 2010 it couldn’t have ended on a sadder note. While I was celebrating being alive after all I have been through recently, another little girl I know lost her life to Hydrocephalus...

This young girl’s name was T’keyah...

I met T’keyah’s mum online a few years ago when Violet was born and diagnosed with hydrocephalus.

Those of you that know me or are a fellow hydro parent know how much I am passionate about making people more aware of how serious Hydrocephalus is.

Hydrocephalus is such an awful condition. While shunts are a treatment for hydro, it is by no means a cure. 7 out of 10 shunts placed will require subsequent operations within 10 years and some more frequently.

Over time, shunts become blocked from the brains protein and debris passing through the shunt system, this can cause the shunt system/valve to malfunction. Then there is disconnection and shunt infection.

For myself and I would imagine other parents of Hydro kids, it's daily worry of when their child's next shunt malfunction will happen. For T’keyah this had happened way too many times in her short life.

This further shows the need for more money to be put into researching better management of Hydrocephalus and the Shunt Systems.

T’keyah was only 6 years old and passed away from multiple cardiac arrests as she was in surgery for yet another one of her many shunt revisions.

Needless to say her family are devastated and also have the added heartache of trying to explain to her siblings why her sister is no longer with them...certainly no easy task.

My thoughts are with them daily as they somehow try to piece their lives back together after such a massive loss.


Alison said...

Congratulations on making it to 5 years. Here's hoping you get AT LEAST another 5 years without needing a revision.

So sad about T'keyah.

Melissa and Luke Young said...

What positive news that you have made it too 5 years without the need for more surgeyr on Violets shunt. I hope this continues for a long time to come. Sorry to hear about your friends daughter that passed away. She looked like a beautiful girl x

Big brother, Little sister. said...

what a double edged sword moment.
Love to Violet and you and also to Kerry and Miss T xo you are all in my thoughts always xx

Josephine said...

5 years, hooray!
I can't even think about losing Avery....that poor family :(

Kristen said...

This hits my heart and it feels a heavy ache. Cayman has been one of those kids that fall in the statistical numbers of many shunt malfunctions. She's had I believe 10 shunt related surgeries within just a little over 2 years. If there is any reason for a shunt to fail, she's explored all those options. And you're right, it's on my mind daily of when the next one might happen and will we get it fixed fast enough. She did have a cardiac arrest in May and I think about that day every single day. Our days are more sacred than they've ever been since then because I held my daughter when her heart wasn't beating and I also witnessed and an amazing miracle of when she came back to us that day...and eventually survived to a full recovery. I am so grateful because my heart knows what it could have been and what our lives would be today. We celebrate the days that go by without the need of a shunt malfunction. I completely share your passion for hydro research and better shunt systems. I completely share your joy over every passing anniversary a shunt surgery was not needed. I completely share the sorrow for the families that lost their fight to Hydrocephalus. It's a tough one.

Sarah said...

It is so very devastating :(

Kristen, when I heard about T’keyah passing away, I immediately thought of Cayman as she also had the cardiac arrest with her shunt malfunction and the very close call you all had.

Scares me so very much to hear of these personal experiences, but also helps me be more aware. x

Rosalie said...

Yay on the 5 years!