Friday, September 21, 2012

I Can't Shout This Loud Enough

Today my heart is heavy.  I am sitting here writing this and listening to my little girl who loves life with gusto puffing and panting because she had just joined in the actions of a Wiggles song.  This morning she got out of bed and ran in to hug me and John and as we cuddled her she gradually got her breath back.  For the first time in exactly two years since her Glenn operation we have felt the need to telephone the hospital and the specialist nurse for advice.  If you remember Louise's first emergency operation, her breathing was her body's way of telling us she was struggling.  For two years I have been telling myself that everything's all right. Today I'm not feeling so confident. Today I'm acutely aware that Louise is not a normal child. Today I'm remembering just why I am a member of Heart Baby groups on Facebook. Today I know we have to do it all again, and maybe again...and again.  Yes, today my heart is heavy.

  Because like it or not I'm a CHD Mom.

So what's it like to be a CHD Mom?  Oh it's just fine.  You soon get very accustomed to sweet little blue toes and a navy coloured mouth after a trip to the swimming pool.  Sometimes we explain to people why we're splashing the warm jacuzzi water onto her to heat her up...sometimes we don't bother, let them think we're mollycoddlers.  There's no wheelchair, or a limp, or disfigurement.  There's no behaviour you need to explain away. It's hidden and secret apart from her beautiful white scars. I don't mind her scars, they remind me that she's one of only 15% of children in the world who need heart surgery that ever receive it.  She's not part of the 85% who die, scar-less. Her scars mean she's alive.

But there are little reminders littered along our path.  Every single form she'll ever fill in will involve disclosure.  Every school trip will involve a discussion with her teachers.  Her insurance will cost more than everybody else's.  Children and teenagers with CHD are encouraged to be involved in non-competitive sports.  But this is a very can-do little girl, what if she wants to be competitive and push herself and by doing so push her half heart beyond what it might be able to do.  What club will want her?  What club wants that responsibility?  

And what if she meets a lovely man and walks up the aisle? Will he be like me and adjust his position when she hugs him lest he feels the strange rhythm of her heartbeat?  Will he move his head away from her pillow (like I do) when he hears that not-quite-right whooshing sound amplified in his ear?  What will two pink lines mean to her? The joy of new life will also mean a challenge to her doctors to help her heart beat for two. What if she needs a transplant?  Will someone else die in time to save my daughter? I hope so. 

But those things are for the future.  Medicine never goes backwards, it only goes forward.  We'll go forward too and we'll manage.

For now I'll continue to struggle to shake that I look at her differently. I'll continue to try not feel sad when I see her having fun. I'll try to stop applying love songs to her and shake the guilt that I have 5 other children I love just as much but I don't apply those songs to them. I'll continue to try and see her as a normal child and not her condition.   Maybe that will never happen, she's a package deal.  She's cute and funny and headstrong and cheekily confident.  And she has half a heart with a strange heartbeat, and a brain 'thing' and a face mark and whatever else we find out about her in her upcoming contrast scan.  That's what she is, she was never anything else.  When we chose life, we chose Louise, we chose the package deal.

For better, for worse, in sickness and health...till death do us part.  

John said to me out of the blue a few days ago 'you know, if she dies'll have been worth it' .  That's not his style but maybe he thinks those things too from time to time.  He's her Daddy after all.  Not all doctors become impassive in the face of illness. 

And now I want to tell you why I'm writing this post.


As you know, Louise's heart defect is part of PHACE syndrome, a genetic condition of no known cause.  There was nothing we could have done any differently to prevent it.  There's no guilt attached. There's no we could have...we should have...We didn't cause it.  Thank God. 

A few days ago I read this article.  Don't pass it and read it.  Rubella is on the rise because of lack of adequate take-up of vaccination.  To benefit from herd immunity a population has to have 95% vaccination.  This is not being reached.  The link between MMR and Autism has been debunked again and again.  Every international paediatric organisation in the world has debunked it,(read that link too) the doctor who came up with this link has had his medical licence removed in UK and America.  He was listed as the worst physician in Medscape and is considered to have done untold and lasting damage to disease control worldwide.

And yet the power of rumour continues to hold people in it's grip of fear.  

But PLEASE note:


Nothing we could have done could have prevented Louise's CHD.  
Something YOU don't do today can cause it in your grandchild.

Now imagine your daughter is not vaccinated and she is not adequately protected by herd immunity.  She catches rubella in early pregnancy Her baby...your precious grandchild has a 90% chance of birth defect...blindness, brain damage CHD.  I'm sorry to say but it will be your fault for heading rumour and hearsay rather than extensive medical and scientific evidence.  It'll be your fault for listening to a proved fraudster over people who have genuine concern for people's health.  Do you think your daughter will look you in the eye when she has just handed over her tiny baby to a surgeon like I had is the hardest thing to do...and thank you for your wisdom? How will you feel visiting a baby wired up to every machine you can imagine and whose life and future are uncertain and in the lifetime hands of doctors and know YOU could have prevented it?

I don't feel guilty about Louise. 

I feel sad about her.

Please don't put this on the plate of a baby.  


  1. Very few parents who are anti-vaccine subscribe to the autism/vaccine link. Of course, because of a celebrity, that is the only coverage in media though! Personally, through a lot of research, I am on the fence but leaning further away from vaccines with each bit I read. I am seeing more and more about how the herd immunity only applies if the exposure to the disease is natural, not through a vaccination. Have you heard that one yet? I think it is the reason many do not vaccinate or feel any moral obligation to vaccinate their child. I don't mean to stir the pot. I just wonder if you had seen the information the non-vaxers are using (and not that autism/vaccine claim that most really don't subscribe to).

    1. Thanks for commenting Lisa, I am really trying to get people to think of the possible long term affect of not vaccinating. Your child may escape any ill effect but the next generation are the ones whose unborn children will be at risk. I want people to know the heartbreak it is to live with CHD and to try to prevent even one child having it by vaccination.

  2. I love you Jen! I hope to someday meet you and your family...ALL OF YOU!

  3. Jennifer, thanks for saying what I'm always thinking regarding vaccinations. Even though my boys disease is also genetic (ie not caused by the fact that I vaccinated them) I'm constantly asked that question by curious, well meaning people. It's as if every childhood disease is being blamed on vaccines; with what evidence?? I sometimes feel alone in my decision to vaccinate. Glad I'm in good company. Sending prayers for Louise as you contemplate your next course of action.

    1. Kelly, I cannot believe people have said something so insensitive (and ignorant) to you!!! It never fails to surprise me what people come out with. Thanks for the prayers, as you well know they are much appreciated, your boys are well and truly placed on our list. J x

  4. Saying a prayer for your little Louise and your family.

    1. Thank You (and I LOVE knitting too, though a 2 tear old isn't very conducive to it!)Jen xx

  5. We have a complicated kiddo, too. So much of what you said has rolled through my mind many times. Thank you for saying it so eloquently.

    1. Thank you Kathryn, I've just had a little peep at your blog, gorgeous Luke is added to my list :-)
      We were at the cardiologist yesterday and they are scheduling Louise's surgery (Fontan) probably after Christmas now instead of this time next year. All prayers are much appreciated. J x