Update 51; Exactly one year on. The people we recognise…

It’s hard to see anything else when you’re looking after your child and constantly pushing to ensure they receive adequate care.  We feel like we have a little more perspective a year later.  On the anniversary of this campaign we would like to thank those that have helped us and Molly.  We would also like to recognise those that have inspired us along the way.   There are some amazing people out there;

-Registrar HH.  We’re not sure Molly’s CHD would have been identified in time without him.  He was incredibly thorough and was the first to truly listen and show us compassion.  He was the first to consider Molly’s heart.  

-Heart Surgeon Mr GP.  He spent over 7 hours in surgery with Molly at LGI and saved her.  We understand he then went back into theatre again after Molly too.  We later observed him working tirelessly late into the evening on PICU even after he’d saved Molly and another baby earlier that day.           

-Dr DS, “Maddie”, “Alice” and “Lydia” in LGI PICU during those 24 hours post-surgery.  All staff on L51 at LGI who looked after us during the following seven days.  It was moving for us to be shown such warmth, support and exceptional care by everyone here.          

-Everyone @ CHSF.  An incredible charity that provided us with free accommodation throughout our stay at LGI.  Molly loves her Katie bear and her medal.

-Everyone @ The Mille Wright Children’s Charity.  A very small family run charity who provide facilities and personally deliver food, and sanitary goods to families at LGI.  We were able to find food without moving far from Molly’s bedside in PICU.   

-Dr P.  Molly loves her cardiologist – as do we.  He showed us empathy and support during our very first contact with Molly .  He has been fantastic with Molly throughout the last two years.    

 -Johanna Rhys-Davies @ Birthrights.org.  Engaged with us meaningfully over many months.  Showed us appreciation and recognition - and much needed encouragement.    

-Terry Phillips. Recognised our need to understand more and facilitated a meeting with the CRG.  CRG representatives & Victoria Jowett - key figures in this space who made time and attended this meeting with Terry to listen to us and who patiently explained everything to us.  

-VF.  A true professional and an ambassador for the NHS.    

-Karen Tomlin.  Reached out to us and helped us understand the history of CHD politics.  Steered us to the Bristol report, Safe and Sustainable Review and other relevant published material.  

-Jon Arnold, Anne Rhodes, Aimee Foster and everyone @ Tiny Tickers.  Jon and Anne have given us repeated meetings to try to help us understand what is happening and why.  We now have more of a balanced understanding of the challenges faced by trusts and sonographers.  We recognise the leading figures at Tiny Tickers have committed decades to helping future families just like us, following their own lived experiences of family members with CHD.    

-Maria Linfield @ Patches.  Recognised the value in our campaign right at the start and helped significantly in raising awareness of our material.    

-Carly, Carl & Ladybird.  For sharing every social media post we ever made.    

-To all those within the NHS who contacted us and privately signposted us to relevant material – thankyou.

-To everyone who signed and shared this petition and everyone who sent a letter to their local MP with us - thankyou.  

-All sonographers - for the crucial work they do.  We recognise and understand the demands and challenges they face.  

-Most importantly Molly’s mum.  For not accepting what she was told and having the strength, instinct and resilience to keep presenting Molly to professionals.  Molly’s mum has enabled this campaign in so many different ways.        

This has now been viewed 120,000 times and shared 2,400 times.  We’re pleased that we have been able to highlight the differences in screening practices nationally to so many people.  We wanted to present evidence-based material for families like us. We hope our campaign will increase awareness of CHD and enable more people to become involved in the debate over fetal cardiac view retention.    

Thanks for reading.  

Molly’s parents.  (Email; mollys_missing_views@proton.me)