My daughter Macy was born a perfectly healthy and beautiful baby.  She was the finishing touch to our family.  Big sister Libby and big brother Sam were so proud of their little sister.  Libby even chose her name.  Everything was perfect.

 

We were discharged from Stoke Manderville hospital after the Peadiatrician noted a slight heart murmor - nothing to worry about and entirely normal for babies.  We enjoyed 12 days of family life together.  Macy fitted in to our lives so easily and was a really good baby.

 

I first noticed something was not quite right with Macy after a week of being at home.  She had a slightly blue tinge to her skin.  Otherwise she was fine.  I took her back to A & E at Stoke and was basically told that I was an over-anxious parent.  This happened again when I became concerned that Macy occasionally was difficult to wake and could go a long time with no milk.  After again being discharged home, I contacted my Midwife who agreed that Macy was not quite right and sent me back with her to A & E.  This time I think they were fed up with me and performed an Echocardiogram - an ultrasound of Macy's heart.  The room went quiet.  I immediately knew that something bad had been detected.  I can not even begin to tell you the absolute panic that started to build up inside me.  My beautiful baby.  The Consultant started to tell me that Macy was really poorly.  I really only heard the first few words - "I'm sorry...'  I think that was when I lost control.

 

Macy was transferred that night by CAT ambulance, blue lights wailing to The Royal Brompton.  By 8 am the next day we were given the devastating news that not only was Macy really sick - but that she was actually dying.  The words 'palliative care' were mentioned.  Macy had been at home, a totally normal baby up until that point.  Our worlds collapsed.

 

Macy shocked the medical staff at the Brompton.  We were told that she should not have been born alive.  She had such severe Hypertrophic Cardiomyopathy (A thickening of the heart muscle) that her whole right ventricle was obstructed by weak thickened muscle tissue.  Yet there she was, crying to be fed - screaming infact.  They offered us an operation for Macy.  We were told that it was 50/50 that Macy would make it through Theatre.  But without the operation Macy would die.

 

Macy had open heart surgery at aged just 3 weeks old.  Weighing only 6 and a half pounds.

 

Again she surprised everyone.  She survived the surgery and fought an amazing battle.  It was heartbreaking to watch.  I was unable to hold her due to her having an open chest as she was too swollen to close it.  The staff covered her little heart with a little white dressing with a heart shape cut out so they could monitor inside.  I was so desperate to hold her.  To breathe her in.  Libby and Sam visited their sister as much as possible and were both so brave.  Not only had they suddenly lost their baby sister but they had suddenly lost their mummy and daddy also as we struggled to be with Macy as much as possible.

 

Macy had some really good days.  But the bad days became more frequent.  She was turned down by Great Ormand Street for a heart transplant.  There was no where else to go.

 

On December 20th aged just 6 weeks and 1 day I finally got my Macy cuddle.  We dressed her in my favourite pink baby gro and held her tight.  Macy died in our arms.  My little warrior princess.

 

Team Macy was created whilst Macy was in hospital.  Now Team Macy consists of over 800 people who have followed our story and have helped us raise money and awareness to fight CHD - congenital heart defects.  We have already raised £10,000 which we have given to PICU as a thank you for their amazing care.  We are now trying to raise another £20,000 to pay for a research Fellow who will study the genetic data into CHD.

 

I am running the Royal Parks Half Marathon on behalf of Team Macy to raise more money - this time for the Cardiomyopathy Association who give support to both sufferers of this horrid disease and their families.  I have found running to be therapeutic.  If Im having a bad day, I just run a little harder.  But this will be my furthest distance yet.

 

My aim is to help stop this happening to other families.  To prevent other families going through the total devastion of losing a child.  No parent should have their lives ripped apart by this horrid illness.

For Macy Moo x

Please sponsor me and visit our webpage at www.teammacy.co.uk or like us on facebook at www.m.facebook.com/profile.php?id=494999723879921&_user=558870164

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