Tiffini Hein shared how her newborn Archie defied his doctors and diagnosis thanks to being read to every day; they read some of their favourite books while waiting in NICU.
Johannesburg, South Africa (03 November 2022) – Every new parent dreads being told there is something wrong with their newborn. For Tiffini Hein, her son Archie was diagnosed with a congenital heart defect shortly after his birth. His medical team gave him a few weeks. Tiffini and her husband were devastated.
What followed over the next few weeks as they spent every moment with Archie was nothing short of a miracle. Tiffini shared the entire experience with the Good Things Guy team and it left us in tears. They started a movement using books and called it “Archie’s Archives”.
“On 16 August 2022, I gave birth to our precious little boy, Archie. Our sixth child (before everyone gets their knickers in a knot about contraception, we have adopted and fostered and do have a TV), he was a much wanted and much anticipated “last one” for our family and his birth was approached with absolute excitement.
Unfortunately, soon after he was born, he was rushed into the NICU and to cut the longest 11 days of our life very short, at 11 days of age, we were told that he had an inoperable heart condition, and would only live for a few weeks. This is news that no parent in the world should ever have to deal with, and we were utterly, totally, completely and all consumingly heartbroken. In fact, the depths of the sorrow a parent feels at a diagnosis like this escapes any capability of the English language. We were broken.
After a few days of sobbing and feeling like the literal bottom of our earth had fallen into a dark abyss, we realised that we did NOT want this precious child to spend his days on this earth with people crying and speaking negativity over him. And so we made a commitment- our time with him would be full of positivity and light, dripping in love and connection.
Achieving this within the sterility of the cardiac ICU is a feat – alarms and devastation rule the cardiac ICU and so carving a space to be sunny wasn’t easy.
So we turned to books.
Allowing us to escape the bleak harshness of our current space, we started reading our favourite books to our precious Archie – transporting him (and us) to magical places, happy spaces, destinations of dreams – where animals roamed free and magic made the hillside glisten and life had not limitations.
And as we read, we saw magic happening. So we reached out to our community to support ‘Archie’s Archive’ by sending us books to read to him. And our days became punctuated with the joy of collecting books en route to the hospital, and our room became filled with even more magic and wonder and we watched as our boy started doing miraculous things that not even the doctors could really explain.
The four weeks that Archie was ‘given’ to live slipped past. And he grew.
Five weeks went past and, on our wishes for him to hear hadedas and enjoy the embrace of our family home and enjoy the beauty of the simple things in life, he came home on a ventilator
More weeks have passed and the little boy who they didn’t think would ever open his eyes is now so awake and full of life and experiencing the things that we only imagined we’d be able to read to him about. He’s teaching us all daily about the good in life and the value of moments and the importance of presence.
And he’s heard his first hadeda. And a few more since then. As we continue to experience firsthand the wonders of this world, we can’t help but acknowledge the power that was given to us all, through a community rallying together and sending us books to transport us to magical places, at a time when the world felt dark and less than magical all round!
Side note – Archie’s condition is genetic, and currently inoperable. Our hope is to be able to keep him on this phenomenal trajectory until he is 2 years old, which is the age at which he could first be considered for the surgery he would need. But for now, we are just LIVING each day at a time! And it’s beautiful.”
We asked Tiffini which books they loved to read most throughout this journey. She shared a few of the favourites as well as what they are planning to do with all the books.
“We started with Roald Dahl’s ‘Danny The Champion of the World’ as it was one of my favourite books growing up. We spent many hours engrossed in this book. Once books started coming in, there were definitely a few favourites including “The Boy, The Mole, The Fox And The Horse” by Charlie Mackesy, ‘Big Panda and Tiny Dragon’ by James Morbury and a few of Nancy Tillman’, including ‘On the night you were born’ and ‘Wherever you are my love will find you’ as well as ‘You’re here for a reason’.
We are hoping that, once we have found some new sense of normal, to be able to share the gift of reading, through Archie’s Archive, with other families in similar circumstances to us – because we saw firsthand the benefit that reading had on us all, and would love to help other families in this same, awful, circumstance.”