Thursday, 8 March 2012

Living on the edge - World Kidney Day

Today is World Kidney Day.  This will probably pass many of you by, but for me, it has quite literally made me stop in my tracks and reflect since reading this on notes from home.

My beautiful Beansey only has one kidney.  At my twenty week scan we were told that "the right kidney is not quite right" and offered a termination.  For me, to write that, has made me wince and cry and feel rather angry.  There was no way on earth that was ever going to be an option and thank goodness we didn't go down that route, of aborting our "not perfect" child because he is the most perfect child you could wish for and more.

credit: notes from home


So, at 20 weeks old in my womb, he was diagnosed with PUV (Posterior Urethral Values) which in laymans terms is basically a flap of skin that grows across the urethra and obstructs the flow of urine, this resulted in his right kidney not growing properly and his left compensating which means he has a "super kidney".

His birth was a three day labour ending in an emergency C section at just past midnight.  I gave him a quick cuddle and he was whisked of to the neo-natal intensive care unit whilst I was left in recovery hallucinating and seeing death.  I eventually got to a ward and had to spend the night, on my own whilst six over women around me tended to their babies.  I pathetically showed every midwife that came in his Polaroid.  They  didn't care.  HAW was with Beansey most of the night and I was alone, sobbing.

The next morning, I was wheeled down to meet him and fell in love instantly.  Here was my big bruiser of a boy, all 10lbs 1oz him and the greedy guzzler latched on like there was no tomorrow.  I cried and cried and cried.  

He had to have an operation at four days old to remove the valve and finally we were allowed to take him home at two weeks.  I had my baby home.

He is going to be nine this year and has regular, yearly check ups. At four years of age, he had the right kidney removed as it was non functioning.  This was a truly awful time but my superstar came around from the op and was doing headstands on his bed within the hour.  His consultant was amazed at how quickly he recovered and still tells his students today about "Super Beansey" .

His "super kidney" is doing the job of two, so whilst he may not be symmetrical or "perfect", he is living life to the full playing first team football and rugby at county level already.  He is loving, clever, handsome and caring.  He is truly amazing and I am so, so proud to call him my son.



I joke about being a control freak but what I hate is the "not knowing".  I'm not even going to go to the "dark place" I go to every once in a while, but imagine not knowing what the future holds for your child and you will understand that I am sitting her quite literally sobbing on my keyboard as a write this.

Nobody can say what the future holds for him, as a teenager he may (or may not) have growth issues, he may (or may not) need dialysis or transplant.   If this is the case, will he spend his life in and out of hospitals.  If so, I think will he ever marry?  Will he have children?  A regular job? In my darkest moments, I think will I outlive him?  Or, will he grow up to be fit and healthy with a long and fulfilled life?

The objective of World Kidney Day is to raise awareness of the importance of our kidneys to our overall health and to reduce the frequency and impact of kidney disease and its associated health problems worldwide. 

Did you know:

1) Kidneys are roughly the size of fists and control the salt and water in your body so that your blood pressure remains the same
2) Their main job is to remove toxins and excess water from our blood
3)They also help to control blood pressure, produce red blood cells and keep our bones healthy
4) Diabetes and high blood pressure are key risk factors for Chronic Kidney Disease (CKD)

You can find out more by going to World Kidney Day and pledging to make a change to look after your kidneys and those of the ones you love.

Peace and Love

S.A.M xoxo

19 comments:

  1. Gosh what a heart felt and beautifully and brutally honest post. What can I say. Whatever happens he clearly as spirit - good strong spirit.
    Thanks for sharing has made me stop and think today.
    Xxx

    ReplyDelete
  2. Lovely post, it sounds like nothing will stop him and if it does he will fight it head on and get on with it.
    I remember the reassurance and information you offered me when we had a kidney issue picked up at our 20 week scan and I thank you again for that xx

    ReplyDelete
  3. Thanks for commenting Wendy, I am in two minds whether or not to take it down after today......I don't do "personal" not because I don't want to but I don't want to blog about anything that could impact the kids or give rise for any form of bullying at a later date...you know me, light and fluffy!!!

    Love Sxx

    ReplyDelete
  4. Thanks Jane so much for commenting - I have heard of lots of people who survive on one but also of those who end up having to go down the transplant/dialysis route. Praying we are spared that....

    Thanks for commenting xx

    ReplyDelete
  5. My goddaughter was born with similiar problems and she too is an adorable little being.

    Beautiful post mrs x

    ReplyDelete
  6. He is truly gorgeous, thank you this made me stop in my tracks, so glad you decided to hang onto your little miracle. My cousin had a tough choice with her little boy last year, they were told his bowel was on the outside of his body and offered a termination. He came into the world very ill with his bowel, intestine and gall bladder outside. He was very poorly and went through ops and a few traumas, happy to say he came home at Christmas and he is perfect. Just goes to show how strong we hang onto life. Thank you xxx

    ReplyDelete
  7. Thanks Jo - I am so sad that they offered us a termination because his kidney wasn't quite perfect. He is a wonderful, normal, happy boy bar the fact he has a super kidney. Coincidentally, the little girl next to him in the neonatal also had her bowel outside her body and had to have it all put back in. She is also now fine!

    ReplyDelete
  8. I hope he continues to drive me nuts for years and years to come...

    Thanks for commenting....(as always!)

    xx

    ReplyDelete
  9. What an incredibly brave and beautiful boy. Thank you for sharing this. Really moved me. You are an amazing mum and I am sure Beanie will grow into a healthy and old man x

    ReplyDelete
  10. Thanks Gemma - he is spirited all right, in fact he is a little brat and pushing his luck at the moment but that is by the by ;-)

    ReplyDelete
  11. WOW, it amazes me that 1 in 8,000 boys have this and yet, so many people are unaware of the condition. Beansey didn't have a complete blockage either but it meant that the urine collected in his right kidney and almost acted like a stagnant pond and stopped it from developing. The left kidney then over compensated and is twice the size it should be, hence the "super kidney".

    I am evangelistic about water drinking and salt intake for all the kids as made me more aware than ever!

    ReplyDelete
  12. That is so amazing. My son had a very similar thing. They too discovered it at my 20 week scan, but he was lucky as his 'blockage' wasn't complete and so his kidney functioned OK. He was monitored until he was four because apparently they can sometimes just outgrown the blockage, but he didn't and so at 4 he had surgery to remove the blockage from his urethra. And all has been well since then (touch wood!)
    But it has made him very aware of his health and the importance of looking after yourself.

    ReplyDelete
  13. Thanks for commenting, he truly is my little superstar as is your William! I like your analogy of today's smile......it really is the most important thing

    x

    ReplyDelete
  14. What a gorgeous little boy, he really is a superstar!

    I can relate to all your fears and I have had the exact same thoughts about my own son's future. It's so hard but when I am feeling down about it, I just look at my son's smile and I remember that today's smile is the most important thing - everything else just has to wait.

    Great post to raise awareness, it could all help in the future if either you or I need it for our little fellas!

    xx

    ReplyDelete
  15. Even if it's only here for today then you've done your bit! You stay true to your wonderful self xxx

    ReplyDelete
  16. That was an amazingly brave post. Beansy is an absolute credit to you and a real superstar. Thanks for raising awareness of World Kidney Day. When I was pregnant with number 3 and 4, my kidneys struggled to cope. I had reflux and there was talk of failure and dialysis. Thankfully, both times the birth of my babies saw the end of the problem. Taking care of our kidneys is so important. xxx

    ReplyDelete
  17. fab post S. My darling father in law had only one kidney and he lived a very long and fully active life. Beansy looks like a super little boy, you must be very proud! x

    ReplyDelete
  18. Thank you for the link to this post. It's a great post, will have to remember to post our story on world kidney day next year xx

    ReplyDelete

Related Posts Plugin for WordPress, Blogger...