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    SUPPORTING CHILDREN WITH CONGENITAL HEART DISEASE

    February 2013

     

    EMILY – 3 years later. (By Sarah Lowther)


    Last year I wrote a newsletter (October 2012) explaining the Congenital Heart Defect (CHD) known as Transposition of the Great Arteries (TGA) and told the story of my amazing daughter Emily.  I thought it would be nice to do a follow up to show how well she is doing.

     

    You may remember that we started our journey at the 20 week scan when my husband and I found out our baby was going to be born with a CHD called Transposition of the Great Arteries.  I remember the night before the scan having an in-depth discussion, and lots of worry, over the issue: Should we find out if it is a girl or a boy?  We decided not to find out, but instead found out news we weren’t expecting.  There was something wrong with our baby’s heart….  Anyway, at 12 days old Emily had her Open Heart Surgery called a Switch Operation.

     

    Following her Open Heart Surgery we went to visit her in the Paediatric Intensive Care Unit (PICU).  People had warned me beforehand that the wires going in and out of her little body would be upsetting.  I didn’t even notice the wires.  She just looked so beautiful with her gorgeous pink lips. At that moment I just knew in my heart that she was going to be OK.

     

     

    Pink Lips! – 1 day post OHS

     

    Of course, as parents, we never stop worrying. Last year Emily fell and knocked one of her front teeth sideways into a completely new position! Her mouth was a mangled mess.  We were given the option – surgery under anesthetic (with all the associated risks of surgery / anesthetic ) to remove the tooth or leave it be and see if it heals itself (with the risk of infection).  The decision tortured me. With Emilys OHS as a baby, the doctors had told me it needed to be done as “TGA is not compatible with life”. With her tooth, either option could be the right / wrong one. And it was completely our decision as parents, without any helpful nudges in the right direction by experienced medical professionals.  In the end we decided to leave it be, which I am confident was the right choice.  Emily, happily, suffered no infection and has only a slightly crooked smile to show for it.

     

    In January of this year, my little Emily turned 3 years old.  I wonder to myself - “Where has the time gone?”   The experience leading up to and following her birth is still raw.  I still have a pain in my own heart when I think of what we have all been through.  But would I change a thing… absolutely not.  From the moment she was born Emily was fighting for her life.  And I truly believe this has shaped her as a individual. She is stubbon, feisty, courageous and also a really sweet, proper little girl.

     

     

    This is a picture of Emily on her third birthday wearing a princess dress.

     

     

    This year alone has been an absolute whirlwind.  A few weeks before her birthday Emily got the dreaded Chicken Pox.  She suffered terribly but coped really well.  She continued to smile and make everyone around her happy with her gorgeous smile.

     

     

    Still smiling –even with the Pox!

     

     

    A few weeks ago we attended the “Birthday Party” of a local Leisure Centre where she showed off her new found skill of crossing her eyes!

     

     

     

    “Mummy. There are two you’s!!”

     

     

    We always seem to be doing something or going somewhere:

     

     

    All dressed up and ready to go meet friends And Emily has made a good friend who lives somewhere on the M4!

     

     

    I can hardly believe that in September this year my little baby will be starting Nursery School full time.  She absolutely can’t wait.  

     

    My little girl is growing up.

     

     

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