Ladies Camera Club

14 Jan 2008

Cruel but not kind

I have just about enough of the NHS.
In fact - ENOUGH FULL STOP.
As I have younger readers on this blog I wont use profanity to express my sheer disgust but I will lay my feelings down if its the last thing I do in my life. If I take my last breath tonight I know that I will have tried my best but it seems it just wasn't good enough.
For 11 solid years I have taken my dear girl to and fro from hospitals across the length and breadth of England. From tertiary to specialists hospitals and from community and outreach centres to minor and major clinics. Reckoning up, we have been to see a doctor about 140 times with regards to Ellies problems. I felt it my important duty to make sure that we had done our best so that when she spreads her teeny wings, she could do so independently, proudly and confidently. You know, get her sorted, secure the problem and seek a solution.
But today we were handed the hammer to beat our last coffin nail in the whole of our 11 years hard work when the doctor told me straight in the eye - what you see is what you get. The moment those words left his lips, my head began to spin. You know the kind of scenes in a film where someone is confused or just been delivered bad news. Well it really happened. Im not kidding. The blood rushed from my head to my heart to my fingers and toes. And whilst Mark was sat next to me, nodding his head in agreement - well, I just wanted to kill them both. And whilst it does not compute that the Doctor and Mark are actually right, I will remain defiant. My response to the Doctor was that I found it unacceptable to let Ellie continue to live her life with deformed feet, weight issues etc etc. I'm sure Ive bored you all to death with other little things that build the puzzle that is my daughter. Would YOU allow a child continue living a life with feet like this?
I am drowning in my own emotions. I think the whole situation is going to get me banged up in some form of rehab. So come on, why not beat me whilst I'm down. Who else wants to add their penny's worth? Smack blogs? Anyone? The time is ripe to strike. And then....whoa... get this...to add insult to injury - this heart problem of Ellie's that had been detected before Christmas (actually we have been suspicious of it since 2004) Oh yes! he heard it alright! For 4 years we have lived with an audible squeak from Ellies heart that no other Doctor had ever heard before. I mean, we went to query the problem but all the peads and even the two heart specialists couldn't "hear" it. And then Dr "what-you-see-is-what-you-get" hears it today and said he wouldn't push the issue just yet explaining that its just a pericardial rub. Is that acceptable/normal in 12 year old girl?
Venting this has made me feel so much better, if Im honest BUT this book is not closed yet.

44 comments:

Rosemary said...

Good on you Kirsty
I worked in the NHS for 40 years and I totally agree with you

Keep on seeking what is best for your daughter she is so lucky to have a mum like you

Dont accept patronising comments like you heard today

My heart goes out to you you should not have to be treated in this way bt someone who is a public servant whose education was funded by you and me and so many others
Your daughter is beautiful a treasure and you keep right on going --- This is the voice of experience -but I wont bore you with the details

But you are completely right in your disgust with todays happenings

Bring it on !!!!!!!!!!!!

Jo said...

Just wanted to give you a big hug (((((hug)))))

jo xx

Brook said...

You are your child's best advocate. If you won't fight for her no one will. The reason we find cures and solutions to these terrible health issues, is because there are mothers that won't take no for an answer. You are her strength and her rock. Don't give up! You can make a difference!

Shannon said...

Oh Kirsty! I am so sorry! No it is not right for that child to live life like that. I should know as my oldest feet are not that bad they are bad. We have been going to Shriner's Children Hospital for free since he was 7yrs old. Don't let that doctor tell you that this is it. Be the mother that I know you are! Fight for what yu and I both know that little girl deserves. There is something and somone out there that can help her. I have some contacts, just let me see what I can do. I can't promise anything. But let me do this small gesture of help if I can.

casey boyd said...

Kirsty I am so very sorry to hear this news and how the doctor put it, I would be much like you in defiance of his opinion wanting only the very best outcome possible. I'm thinking of you and sending you{{{hugs}}} across the miles!

Close To Home said...

Oh I am soooo sorry. I'll be praying and thinking of you. Can't believe what the dr. said. Sometimes they can just be heartless, b/c of how professional they want to be/seem to be and forget about the patient, imo. I am sooo sorry. I hope you can find someone else to help.

Meglet said...

Kirsty - my heart goes out to you. Keep going.
Meg. xo.

em said...

Oh Kirsty. This just breaks my heart. Your poor little girl. You have every right to vent. I can't imagine how you feel.

And while I'm not one of you "younger" readers...I would swear away if I were you!!!

Sharie said...

In your writing for today I hear that you're a mother who has faith and hope for her daughter's future. How can that be wrong? Please take care of you, too.

SuzyB said...

I shall speak to you today (((((((((hugs))))))))))) xx

Craftybanshee said...

After reading your post I don't know what to say apart from keep fighting for your daughter. I would keep on at the Dr's about getting her feet/gait etc investigated too. It looks uncomfortable for Ellie, looking at the photos.

You know Ellie better than anyone else, it must be so draining and frustrating for you both. I'm not much help but I didn't want to read and run from your blog.

D@nielle said...

oh sweetie, I can only imagine what you are feeling. however I think I would share the same sense of defiancy like any mother would ! You want her to have pretty little feet that can carry the hardship that she must endure every day because people are ignorant ....

Heather said...

Sending love and hugs, Kirsty.

Polly said...

Awww sweetie! Poor you. Poor Ellie. I have recent experience of how bad the NHS is... A&E for 5 hours with a 1yr old and when he finally stopped breathing ~ they saw us :( The whole thing makes me so so sad. Keep going. I echo what everyone else has said.

You are a strong naaawwwthooorrrn lass who has the fire in her belly to not take this as an answer. Ellie is extremly lucky to have you as her Mummy and i'm sure when she's old with kids of her own she will realise what a wonderful Mum she has/had back then. Men are doofuses, what do they know, eh??!

amber jane said...

(((((hugs)))) To you and Ellie - I want to smack them for you and scream at them at the top of my lungs. They are just as bad here hun otherwise I would kidnap you both and move you over here so I could look after you xxxx

Cath said...

You know the song!
Pick yourself up, dust yourself down and start all over again.
Just don't let this get between you and Mark .

Love to you all

Cath xx

Di said...

Kirsty, nothing really to add to what's already been said. As a mother to four and grandmother to one, I would be doing what you're doing. No question. I couldn't rest. I wouldn't rest. It's not acceptable. I'm so sorry for you, as a mum. But also for Ellie. Obviously. Yep and keep the faith. Hope and faith for a better future for your daughter. Big hugs. In my thoughts and prayers. x

tjc designs Blog said...

I so wish I could do something - but all I can say is I am hear if you need further venting x

Suzanne said...

I am shocked and saddened by this. I do hope you one day get the support that you need. Have you ever thought of seeing a doctor in the US??

joanne (spagirl) said...

hi kirsty... you are such a wonderful mother... keep up the fight! sending you hugs!

Caroline said...

Sorry to read that Kirsty, certainly not the response you expect from someone in the caring profession! Keep on fighting hun and you will get there... Thinking of you xx

Marja said...

That totally sucks that the Dr has taken the attitude he has. I usually hate the NHS but when it came to how they have cared for Noemie I have to say they have been incredible. Is it maybe that London hospitals are "better"? Have they not even done an echo to make sure that her heart problem is really nothing to worry about? It's such a simple thing for them to do (like a scan when you're pregnant). Can they not give you a referral to a heart hospital down here (The Brompton).I don't know much about feet so am not sure what to suggest but I find it odd that they can't do anything to help her.

Sorry, I've probably not been much help at all. I do understand how frustrating it is though to be faced with problems when it comes to your baby. Please don't give up, Drs are often wrong and as others have said, Mom's know their child better than anyone so you will do what is right for DD.

Sending you massive hugs.

Carol said...

Kirsty - whatever they say to you, just ignore! and keep fighting for that gorgeous little girl of yours.

What you see is most definately NOT what you get! there is always someone somewhere that can and will help you - just keep on trucking hun xxx

As for smacking! - heh, what the doo dah (i would normally write a word that starts with an "f" at this point) do they know! they only know you as a "product" as such. They have no idea of the person within.

Big hugs xxxx

Terrie B x said...

Bless you all Kirsty...I can only echo all the other remarks made on here today:)xxx
Mmmmmm...........................
I just wonder???? What if it was one of his children??????

Kate said...

I'm just befuddled. What on earth could that Doctor be thinking??? I can see plainly in the picture that Ellie's feet need attention. "What you see is what you get"?????? WHAT???? *&%$#@&*
Is he kidding??????

You keep fighting for that gorgeous little sugar baby of yours. She's so lucky to have you for a Mom. Big hugs from me!!!

Magpie said...

Wasn't it Winston Churchill who said, "Never, never, never, never give up"?

And Thomas Edison who, after his 10,000 failed attempt at making a light bulb, said, "I haven't failed; I've just found 10,000 ways that won't work!"

It's up to you and your gut instinct to follow this through until you personally are satisfied that there are no further helps or advances or solutions to be found. Don't let that one pessimistic doctor convince you that this is all the further Ellie can go!

My sister had a stroke over 35 years ago, when she was 21. She was in a coma and they told my mom "this may be all you have of her" and "she isn't likely to survive." My mom insisted on hanging around, talking to Jane and believing that she'd come out of it. She came out of it, but paralyzed on the entire right side of her body. They told my mom, "that's it; whatever she gets back through therapy within a year is all she'll get back." My mom decided to bring her home and find lots of therapy for Jane. 25 years after the stroke, Jane got some feeling back in her right foot.

A panel of experts told my mom that Jane would be lucky to live to age 40. Jane is 55 and still strong.

So don't believe everything they tell you, and don't give up until YOU think there's nowhere else to turn (I can't see that day ever coming, because you are one determined lady!).

Treacle said...

Sending you massive hugs

(((((((hugs)))))))

Sam said...

oh Kirsty, keep fighting, I am mad on all of your behalf so goodness knows how you must all feel.

Sam x

Aky said...

Ki Kirsty - let me say it for you - "It's shit - and then some"

Take care xx

Tracie Hudson said...

Sending hugs - stay strong and true to your belief that Ellie will go on to acheive all you desire for her - she will - with you fighting the fight.
T.x.x.x

Louise Woolford. said...

So sorry to hear what you've been through, sounds like such a long hard struggle, I cant imagine to think what you must be going through as I cant have children, but I really do admire you, your such a strong women.
luv n hugs
xx

Jo E said...

Kirsty, I can't help other than to leave you a message to encourage you to keep fighting for what you believe is right. It may sometimes feel like you are achieving nothing but you are doing what anyone who loves a child should do, and I admire you for every battle you fight.

ger76 said...

Oh Kirsty it's just not fair!!! Sending (((HUGS))) to you all & hang on in there love Ger xxx

Victoria Wilbeck said...

Kirsty - I read your blog entry last night and wanted to respond but was so angry at that doctor - I was afraid of what I would write.

God gave sweet Ellie to you for a reason - because you are strong, intelligent and a good mama. You and Mark can handle this and continue to be strong advocates for her. Hang in there!

I will continue to pray about this.

Much love from Texas!

Marlou said...

sending a hug your way Kirsty, in my prayers xxx

Jessica said...

keep fighting kirsty. i hope it all works out.

xoxo

Cath said...

Don't let it lie Kirsty, i wouldn't.
Corey has very similar feet and ankles. He over pronates terribly which makes him prone to falling over. Does Ellie have Piedro boots Kirsty? And do you see a Physio?
HUGS

Suzanne said...

Oh Kirsty I am so sorry to hear how things are going with the doctors. I really thought things were on the way up with you getting support and help and people on your side to find out what was causing all these issues.

The frustration is so hard to bear. I hope you use the anger positively and your friends to vent with.

xxx's

Ruth said...

I know how you feel--we've been there done that with our daughter too--the worst was one docter saying he was sorry for us!!

cannycrafter said...

Hi Kirsty, I know just how you feel. I was told my son would never learn to write and would probably just be able to sign his name on a cheque, but I refused to believe them and fought for him all the way! He has just gained his GCSE's. My grandma always said, we were chosen for a reason! I started my blog to let other people know that Dyspaxic children are not a "write off!" I know my son has not had physical problems, apart from co-ordination, to cope with, but emotionally he struggles every day and as a mother you struggle for them too.
Recently, craft has become my escape to cool down and I know you will carry on fighting! You are an inspiration!Love Carolinex

Cazzy said...

Hi Kirsty, I haven't read back to get the whole story yet, but the feet look awfully like mine did, but they operated on me when I was 8, and took bone grafts from my shins to fuse some bones in my ankles. They said if I hadn't had it done I would be in a wheelchair as my knees had started to knock together.

At the time it was pioneering surgery, but I thought it was common now. I don't know if it would help Ellie, probably not the same thing at all - just a thought.

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