‘He’s The Apple of Grandma’s Eye’- Richard’s Full Story

When we first heard we were expecting our first grandchild we were living in France blissfully unaware of what lay ahead.

At that point I had no idea that my son was even in a steady relationship, let alone the notion of grandchildren coming along. So I had more or less given up on the prospect of grandparenthood.

Our son was visiting us when he received the news of the pregnancy. After the world stopped spinning we quietly settled down and contemplated our new future, excitedly envisaging family summers playing with our grandchildren, even imagining how two lively kids would love climbing our trees and jumping into the pool and how we would introduce them to the lifestyle and culture of southern France.

And then… Bang! A scan had revealed an anomaly in the unborn heart and the world started spinning again!

A congenital heart defect was diagnosed and the options were slowly revealed – termination or an uncertain delivery, possibly, by an equally uncertain future. My son and his partner made the only decision that they possibly could – give their baby a chance, no matter how slim that may be.

Max was born at St Mary’s in Manchester and was immediately transferred to Alder Hey, where, a few days later, he underwent his first stage open heart surgery. Owing to complications mom was kept at St Mary’s and had no chance to hold and comfort her newborn – dad was by Max’s side throughout. Our first visit was a short time later and the instant I saw Max through the window of his ward my heart stopped and I felt like a hole had opened up inside me – there he was safely cocooned in his oxygen capsule with pipes seemingly coming from everywhere and beeps and whistles sounding all around, I blubbed like a baby – how was this journey going to go?

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We were on hand that first Christmas and spent most of it camped in our campervan in Alder Hey car park shuttling between Ward K2 and Ronald Mcdonald House, offering whatever support and practical assistance we could but we ultimately had to return to France. Over the next couple of years we had infrequent trips to England each time wondering if Max would remember us when we visited. The first time we met again he pressed himself so hard into my chest that it felt he was trying to become part of me, and of course – he is!

Max’s big brother James slowly came to trust us with his fragile little brother, eventually realizing that we weren’t going to get between them and only wanted to be part of his life.

On our return to France we did the only thing we could do – we researched HLHS and the possible outcomes and an unspoken conversation took place between us, followed by an equally unspoken decision that we couldn’t possibly be absentee grandparents and for all that we loved our French lifestyle we would never be able to fully share it with our family so we had to move to England. By this time our Skype conversations with our grandson Max were becoming more painful to terminate – but what a connection that provided while we were apart.

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I still marvel at and give thanks to the hard work, skill, courage and dedication of the cardiac team at Alder Hey who, during a 13 hour procedure during which they were working on something about the size of a pigeon’s egg (Max’s heart), gave Max his chance – heroes one and all.

And France – do we miss it? Of course we do. Do we regret giving up a quiet, peaceful, sunny lifestyle for the chaos, uncertainty and stress that comes with having a grandchild with HLHS and three other grandchildren (oh yes – sister Willow came along about 15 months ago!) – do we hell as like!

When Max had his second stage Norwood he was a model patient – four weeks in hospital if I recall – but last year his Fontan was not so easy and he had a tough time of it after the procedure meaning he spent several weeks in and out of HDU fighting infection after infection and needing mom and dad near him. During this time we moved into our son’s house and kept things stable for the other two kids – school runs, trips to the park, helping with homework and taking them to Alder Hey at weekends to be with mom and dad – all the practical things that we came back to England to provide.So how’s Max today?  He’s eight now and continues to fill us with joy and inspiration – not complaining, asking for nothing, loving school (mostly!), getting on with being a kid and not letting a little thing like half a working heart get in the way of his life. He’s the apple of grandma’s eye and can do no wrong!

Written by Richard Barley (2016)

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