Friday, 16 January 2009

3 Year Shunt Anniversary


Today is Violet's 3 Year Shunt Anniversary!

I know when I make these posts celebrating Violet’s Shunt Anniversaries some people may wonder why. To us it's such an important date, as it's a reminder of another year passing since her shunt was placed and another year passing she has not needed her shunt revised.

Hydrocephalus is such an awful condition, I have lots of people say to me ”well she has a shunt now, so she is fine” but this is not the case. 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 & where their child's next shunt malfunction will happen. Sometimes I wish I could be advised so I can at least prepare myself mentally and emotionally for that day.

I know we all worry about our children whether they are sick or not, but then throw in a few medical conditions and it feels more warranted to panic easily.

Hydro children can start to act out of character and appear to be sick with what you hope is just common illness symptoms. What doesn’t make it any easier is that shunt malfunctions have very similar symptoms of common illness. A person with shunted hydro can have something as simple as headaches, vomiting, irritability and sleepiness and most of the time ends up with a trip to ER just in case it is a shunt malfunction etc.

You only have to read the tragic loss of Leilani Schweitzer's son Gabriel to see how serious this can be.

Hydrocephalus is 1 of the medical conditions that Violet has, but because Hydro can be life threatening we can never be complacent.

I don't think there will ever be a day I won't worry unfortunately...it's all part of life as a parent of a Hydrocephalic child.

11 comments:

Sweetest Girl in the World said...

Wow! Well said!

It's hard to imagine our lives without worry. I'm happy to hear it's been 3 years!

suealeen said...

I'm still waiting for the moment that her shunt wouldn't need a revision anymore (at least for years like Violet.. I'm glad to hear that).

It's 4 times within the period of 12 months already!

Sarah said...

Suealeen, I too hope Syafiah's stabilies and she has many years without the need of more shunt revisions. xx

Laura said...

You put to words exactly how I feel most days. Most people, except other hydro-mammas, just don't get it.

How wonderful that's it's been 3 years, revision free! Here's hoping for many, many more.

(Cara celebrated one year in August, so we are both fortunate.)

Dianne said...

A really powerful post Sarah. It wouldn't be out of place in a magazine or newspaper. It's simple, informative and very touching. And I think a lot of people could do with getting a bit more of an understanding of what it's like to always have that worry in the back of your mind.

Congratulations on this anniversary, and here's hoping there's many, many, many more like it!!! I also hope that more research and medical developments means that there'll be less for you to worry about in the future.

xo

Samantha Trenerry said...

A 3 year anniversary is definitely something to celebrate, it is wonderful, and as a mother of a child who has had so many shunt complications, it gives me hope that one day I will be posting the same. Well done miss Violet on your 3 year anniversary xox

Sherri said...

Hi! Wow, Violet is a beautiful, beautiful little girl. You must be so proud of her. Thanks for visiting our blog- We'll be checking in with you often!

Family said...

You said it all - the day of shunt failure is intimidating; its hard. Its harder imagining life without our shunted babies!! Thanks for the post. 1 Timothy God did not give us the spirit of feat but one of power, self discipline, love

Anonymous said...

What a wonderful blog and a great place to share. I will pass it on to my daughter for sure. Nearly 5 months ago, my infant grandson started suffering seizures and was catatonic. He was 3 1/2 weeks old. When taken to a children's hospital he was found to have a large skull fracture above the right ear. The following day, with an opthamology exam they discovered he also had severe retinal hemorrhaging in both eyes - SHAKEN BABY SYNDROME. He also had a corresponding brain bleed in the back of his head, consistent with SBS. I will never forget the look on the nurse's face when I asked how bad his brain damage was, and she said his scans looked "really bad". He was sent home 10 days later into the care of my parents (I lived in the home at the time of his injury so had to be cleared to be around him), then 2 days later he was back in the hospital where he was diagnosed with hydracephalus, they put a vp shunt in the next day. He is a miracle - he is 5 1/2 months old and he started rolling over about 3 weeks ago, much later than his brother did, but on target nonetheless. He sees and tracks very well. He laughs and giggles and reaches for things. He was in the 80 percentile for development at his last physical therapy appointment. None of his care providers can believe how he has progressed. Yet, today, he is back to the doctor because he is "acting funny", and it is a reminder of how fragile he is, a reminder of how we have to keep a constant watch for anything that could indicate shunt failure. It is a reminder that some MONSTER hurt this precious little man, this once perfect little baby. Now that I have told his story, I just want to thank you for sharing your journey and sharing your daughter, and having a place where other parents who are dealing with the same situation can go for support. God bless you!

Anonymous said...

Hi Sarah,
I have been reading about your daughter. My daughter is turning a year old this week and also has Hydrocephalus and is going for surgery on her actual birthday this Friday. I tried to send you an e-mail but I don't have an Outlook account. Could you e-mail me - cabostik@hotmail.com I would really like to ask you some questions. Thanks! Amanda

Manda said...

Hi Sarah,,I'm Primanda from Indonesia.
My daughter also has the same experience with Violet. She also experienced VP shunt surgery. Her hydrocephalus results from meningoencephalistis that she suffered from before. I have the same worry with you. Now, she seems to be healthy, but I'm so worry abt her...I don't want any replacement. she is 7 months now.
Sarah, can I be your friend? I really want to have a friend who has the same experience with me...please visit my blog: www.primanda83.blogspot.com
thanks