Caring for Jack“You’ve no time to think about yourself, because all my thoughts just go into Jack and his care.”

As heard on The Ryan Tubridy Show

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On Monday’s Ryan Tubridy Show, Ryan read an email from a carer called Nina, who was writing to him from her hospital bed. Her email detailed how her life had changed since lockdown started and schools closed on 12 March last. Following that email, Nina spoke on the phone to Ryan on Wednesday about caring for Jack, her four year old son. She started by taking Ryan through her pregnancy and Jack’s birth – both of which were traumatic, to say the least. Nina had four rounds of IVF before she got pregnant with Jack. Then at her 20-week scan, doctors told her they were worried about her baby’s development, but they couldn’t say exactly what the issues might be.

“Twenty weeks of bliss and then unfortunately at the 20-week scan I was made aware that there was a problem. And things just kind of tumbled from then.”

After multiple scans and a transfer to the Foetal Assessment Unit in Holes Street, Nina first heard the word ‘genetic’ used in relation to her baby’s suspected problem.

“From then on I was on alert that, ‘We don’t know what’s going to happen, we don’t know what to expect and we just want to keep monitoring you.’”

Nina had a planned C-Section at 37 weeks. Jack emerged into the world, Nina told Ryan, took one breath and then stopped breathing.

“My first look at Jack was over on a little table with, it could have been four or six nurses and doctors working on him, to get him going, get him breathing. So that was my first view of my son.”

Nina spent the following month sitting beside Jack in the Neonatal Intensive Care Unit in Holles Street, watching the premature babies around her getting bigger and healthier and being discharged, while her Jack didn’t seem to be growing at all. He had lots of different scans and there was a lot of head scratching before Nina was given the news that she’d been hoping for:

“The relief that I felt when I was told he was normal. They were words I prayed for for weeks. And I think I cried. And it was all I wanted to hear was, ‘genetically, he’s normal’.”

Jack came home after four weeks in the NICU and, after a short time of excitement with family and friends, Nina started to worry. Jack wasn’t feeding well. He wasn’t reacting to stimuli like a baby should. He wasn’t gaining weight. The public health nurse made a call to Temple Street Hospital and Jack was brought in immediately. He was fed through a naso-gastric tube and Nina thought that they’d get some food into him and then he’d be able to go home.

“That NG tube went in and it never came out, Ryan. It stayed there for the next 9 months and then they put on a peg tube, a tube that goes directly into his stomach. And that’s still there, four and a half years later.”

Ryan asked Nina if her four year old son has ever said a single word to her. The answer: no. Jack suffers from a rare genetic condition called Oberklaid-Danks Syndrome. He has a severe intellectual disability and has fusion in bones in both his arms.

So what is a typical day like for Nina and Jack? He gets food at 7am and meds at 8am, followed by a breakfast feed at 9.30. Then it’s nursery rhymes on the iPad for an hour. That’s followed by a Zoom call with Jack’s speech and language therapist, which has brought Jack on and kept Nina sane, as it gave her something to focus on. Then it’s out for a morning walk, Jack using his walking frame, which Nina says he’s getting better on. Back home for water – through his tube, as he doesn’t take liquids orally either – and plug him in for lunch, followed some play and by another walk, more meds and afternoon playtime. Jack’s back at the table for a tube feed at 5.30, after further water flushes. Then it’s The Night Garden and the night-time routine starts: pyjamas, wash, more meds and into bed. Nina grabs something to eat then before plugging Jack back in for another feed at 10pm, before she goes to bed.

As you can see, Nina doesn’t have the opportunity in her day to relax with a YouTube yoga class or to take up Pilates. What has become something like normal for a lot of people during lockdown isn’t ever an option for many carers. Nina credits the Jack & Jill Foundation with giving her some respite during the last four and a half years:

“If it wasn’t for them, I would have fallen over a long time ago.”

Last Wednesday Nina thought she was having a stroke when what sounds like exhaustion caused her body to virtually shut down. She told Ryan that she’d been feeling fragile for a while, but taking some time off to rest or even see her doctor wasn’t really doable.

“You’ve no time to think about yourself, because all my thoughts just go into Jack and his care. I can’t take time out because there is nobody else to do it.”

Aside from her time in Holles Street when Jack was born, Nina had never been in hospital. Last week, that changed when she did, in fact, fall over. To hear the full compelling conversation between Ryan and Nina, go here.

And you can hear Ryan reading the email Nina sent from her hospital bed last weekend here.

Niall Ó Sioradáin

© The Listener 2020

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