Friday, 17 February 2012

Treasuring These Things

Asleep at last...
I think as a mother some of the most precious moments inevitably follow the ones that you'd really prefer to edit out of the day if you could.  Adam has been very good all day but having finished his dinner, played cheerfully in his bath and having finished his bottle, he became utterly hysterical.  Clearly he was tired but instead of being willing to be rocked and cuddled as he normally does, all he wanted to do was to sit up and scream hysterically, waving his arms around and successfully hitting me in the face.  After around ten minutes of this, I'd had enough so I took him up to bed and put him into his cot.  A little kiss and cuddle and I was relieved that he seemed content to play quietly but the moment I'd gotten to the bottom of the stairs, the screaming started again.

"MOTHER I do NOT want to sit in my cot alone.  Get BACK here AT ONCE!" (This would be the approximate translation of course)

So I went back upstairs and put Adam into our bed instead, lay beside him and cuddled him for a while.  It only took a few moments for him to become sleepy and start to doze.  Then he rolled over on his side, cuddled up against me, gently touched my face and put his arm as far around me as he could reach and fell asleep.  It was one of those moments that reminded me of part of the Christmas story, "Mary treasured all these things and pondered them in her heart."  There's just something about those simple moments that I just want to treasure, they can't be captured on film or CD but I hope I remember them anyway.

Earlier on today was another important moment for me.  Since Adam was so ill and has made such an amazing recovery, I've wanted to do anything I can to prevent another family having to go through such a horrible experience.  So for that reason, I've stayed in touch with the Group B Strep Support Charity and their amazing founder, Jane Plumb.  Many years ago, one of her children died after a GBS infection and she founded the charity to offer support to other affected families and to try to get routine GBS testing introduced in the UK.  Just last week, she visited Buckingham Palace to receive a very well deserved MBE from Prince Charles for her work.  

Jane and GBSS continue making contacts with the media to get the story of GBS published as often as possible and many families who have experienced the trauma of this horrible infection courageously share their stories as case studies.  A number of times, I've read with tears in my eyes of the families whose children have died or have been permanently and severely disabled after perfectly healthy pregnancies and births, all of which could be prevented by a simple swab test to detect whether pregnant women are carriers of the GBS bacteria.  (If you want to know more about the GBSS charity, you can visit their website here:  Group B Strep Support)

Today, at Jane's request, I was a guest on BBC Radio 4 for Women's Hour as they were discussing GBS and why it's not part of routine anti-natal testing in this country.  I agreed to briefly share Adam's story as Professor Philip Steer shared the medical information on GBS.  It's always hard to relive the trauma we went through and difficult to remember those dark days now that Adam is so healthy, but at the same time I also want to continue remembering and being reminded of just what a miracle Adam is and how fortunate and blessed we are to have him with us and so full of life.  If you want to hear the interview, this is the link to the Radio 4 program on BBC iPlayer, I'm not sure how long it will be available to listen to but my section is at 33:12 of the 45 minute program:

Of course I had notes on things I wanted to say and of course I also forgot most of them while I was being interviewed but in general, I think the interview went well.  There was however something really important that I wanted to say and didn't find a way to while I was on air.  It's important enough to me that for the record, I want to mention it here.

It's true that I am very sad the UK doesn't currently offer routine GBS testing as part of anti-natal care and it's also true that I believe with all my heart this testing should be offered.  However, even if the policy isn't changed, at the very least I believe the risks of GBS should be discussed with women and it should be made clear that private tests are available and affordable.  This would at least empower women to be able to make their own choices rather than leaving them blissfully unaware until, if they are unfortunate enough to be carriers and have susceptible babies, their children are fighting for their lives in intensive care.  For that reason, it is an ongoing grief for me that I was not told about GBS and that I had never heard of it until Adam's little body was shutting down as it was overwhelmed by this horrible infection.

Despite all of this, the fact remains that the care we - and that means Adam along with Chris and I as parents - were given by Shrewsbury Hospital was absolutely amazing and we cannot fault it.  Nearly eleven months later, I remain in awe of the doctors and nurses who work in neonatal at the very edges of life and death.  Even when they were sure Adam was going to die, they still poured everything into his care and determinedly fought for his life.  Now that Adam is well again, we continue to receive amazing support from the healthcare team that surrounds us as we cope with the after-effects of this infection and the disabilities Adam has.  At various times Adam has appointments at four different hospitals under five different Consultants.  We also have bi-weekly home visits from Adam's amazing Teacher for the Deaf from the local Sensory Inclusion Team.  It is his job to work out not just what Adam is capable of hearing but ultimately what he does with sound or what he will understand based on how his brain translates what he hears and to match this with his development in other areas.

All of that to say that even though it grieves me that I wasn't offered routine testing and therefore the fact that I am a GBS carrier was not picked up before Adam was born; I am still incredibly grateful to the NHS and the dedicated health professionals who are part of it, not only for saving Adam's life but for continuing to support us as we work out how to help Adam as he grows and develops.  So to all of those who have been and continue to be involved in Adam's care, thank you.  We are so grateful to you.


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