Liverpool radio presenter’s new book after watching baby boy’s fight for life

Liverpool radio presenter Adam Weighell has written an emotional new book after watching his tiny son’s fight for life.

Dear Toby, which launches on World Prematurity Day on November 17, is both a guide for other parents and a heart-wrenching account of what it’s like to watch your desperately ill child battle daily for life in a neonatal unit.

Toby was born 14 weeks early and weighing just 1lb 11 ounces (760 grams) after medics were forced to deliver him by emergency caesarean when Adam’s wife Gemma was diagnosed with life-threatening pre-eclampsia.

The tiny baby who ‘weighed less than a loaf of bread’ spent 142 days in hospital, during which he faced countless challenges, including two brain bleeds, 11 blood transfusions, pneumonia, and sepsis.

He was resuscitated three times, underwent a bowel resection, had his appendix removed, and more.

Adam, 43, from Allerton said:

“It was a hell of a shock. There were many times when we feared we might lose him, that he wasn’t going to pull through.

“Being born at 26 weeks means you’re at risk of quite a few complications – and Toby seemed to get them all.

“As a parent, I felt helpless, powerless even. There were no guides for parents suddenly thrust onto this neonatal roller coaster.”

Adam began a diary, recording everything that was happening to his son, to create a record and to help manage his emotions: “Initially it was for me to help myself understand it and try to make sense of it all.

“Then as I kept writing it, I thought if he made it, Toby could one day read about what he had gone through to stay alive. And, eventually, I wanted to get it out as a guide for other parents to be able to use it and get some hope and some comfort, and to realise that they’re not alone.

“It can feel so isolating.”

Toby is now a lively, thriving eight-year-old, but when he was born on June 23, 2017, the picture was very different.

As soon as he was born, he was transferred to the Neonatal Intensive Care Unit in Liverpool Women’s Hospital – he spent 115 days at the Women’s and 27 at Alder Hey where he underwent operations – and Adam says: “It was a shock, to see something so small and so fragile.  I had never seen anything like it.  He looked other-worldly.

“He had papery skin and you could see the blood vessels in his body, and the heart beating inside his chest; and his ribs were tiny like the length of a double-A battery. It was scary stuff.

“It was not for the faint-hearted going into the NICU for the first time and hearing all the beeps and the alarms – and my son was very good at making all the machines beep and alarm.

“It’s very hard to get used to.

“You go into fight or flight mode, and there are times when you want to get up and go because it all just feels too much. I make no secret of my mental health struggles. At one point, I became so ill. I even got shingles.

“But of course, you’ve got to fight, and you have to support this baby, and each other – and the amazing staff who are doing everything they can.

“I started the diary to gather my thoughts and put my emotions down, and so I could write down all the problems that were befalling our son. And I kept writing throughout his journey.

“I wanted to use my experience to help other NICU parents navigate the setbacks, the long nights, and the moments of despair that come with having a premature baby. But I also wanted to share the hope and show that there can be light even in the darkest days.  There are moments of pure laughter, and it’s amazing how much we can laugh when we are in the depths of despair.”

Adam, who with Gemma, 40, now has a little girl, Ruby, who’s four, says:

“I couldn’t find anything that captured the harsh reality and all the science behind it, in a way that felt honest and reassuring, so I wrote Dear Toby.”

As well as the heartfelt experience of a dad, the book contains information about the science and studies behind neonatal care, the astonishing progress that’s been made, and survival statistics.

Every year, 100,000 babies are cared for in neonatal units across the UK: that’s one in seven.

Decades ago, babies born at 26 weeks simply wouldn’t have survived.  

Adam, who’s just launched a new breakfast show with Gemma Cutting on In Demand Radio’s Demand’s Decades, jokes:

“There are times we look at Toby and think you put us through the wringer mate, you’d better be good.

“And there are times we look at him and think it’s incredible he made it considering what he went through.

“We are so grateful to the NICU at Liverpool Women’s Hospital and Alder Hey.  The people there are incredible. They literally saved our son’s life multiple times.

“Dear Toby is also a tribute to them as much as anything.  Had he been born anywhere else he might not have made it through.  They are so skilled that we truly and firmly believe that had he been born in another part of the country we would not have our Toby.”

Adam and his wife Gemma are closer than ever after their experience:

“The book is a guide for other mums and dads on the neonatal rollercoaster, and it’s also a reminder that love, courage and hope can carry you through.”

Dear Toby is available from Amazon and other online retailers at £11.99 p/b and £4.99 eBook with part of the proceeds going to the Neonatal Unit at Liverpool Women’s Hospital and Alder Hey Children’s Hospital.

You can pre-order Dear Toby here.

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