I’ll never forget the consultant in temple street telling me I’d be doing the job of ten mothers..
Single mum Nina Fitzpatrick full of praise for support she and her disabled son Jack have received from Children’s Foundation charity
Nina Fitzpatrick thought it was a miracle when her baby boy was born following gruelling rounds of IVF treatment. But her joy turned to despair after doctors said her son may never be able to walk, talk or eat.
The devoted single mum revealed she would have fallen apart without the tireless support from the Jack and Jill Children’s Foundation.
Nina told the Irish Mirror: “My path to getting Jack was a very strange, hard one. I don’t know what normal motherhood is like because I only know our world.
“All I ever wanted to be was a mum. All those heartbreaking rounds of IVF and then a miscarriage, I thought that was the hard bit, but that was child’s play compared to when Jack was born.”
As a career-driven HR manager, Dubliner Nina didn’t have a man in her life. But when she decided to have a child, the brave mum opted to go it alone. She said: “I worked in a very corporate world, it was suits and meetings. It’s like night and day the way my life has changed.
“I had a number of rounds of IVF before I had Jack so I went into this whole world of being a mum by myself.
“When I was pregnant I was told there was something wrong each time I went for a scan in Holles Street.
“They would say, he’s very small, there’s fluid, heart problems, but at 33 weeks they said there’s a genetic issue. It ruined the rest of the euphoria of my pregnancy, it was just constant worry.”
Doctors broke the news to her that the baby she was carrying was so tiny he had a condition called intra uterine growth restriction, or IUGR.
They were anxious to get him to 37 weeks, so Nina went in to hospital for a C section. Still, Jack’s entrance to the world was a dramatic one.
She said: “It was like a scene out of ER. There were about 12 people around me. When Jack came out he took one breath and stopped breathing.
“The first image I have of Jack was him being resuscitated, then he went off to ICU straight away.
“He was only six pounds when he was born. When we got home it was such a struggle to get him to feed, he was screaming.”
The public health nurse was so concerned Jack wasn’t growing that Nina had to take him to Temple Street.
She said: “I thought we might be there for a night. They put him on a feeding tube and he’s still tube-fed to this day.
“This tube went up through his nose and into his stomach. I had to be trained in how to pass that tube, it was quite horrific.
“If you do it wrong you could almost drown him with food.
“He had to be tubefed every two hours with severe reflux. I didn’t leave the house for weeks, I felt like a prisoner in my own home.
“This machine took over my life, the first few months of Jack’s life, passed as a blur.
“We were back and forth to the heart team in Crumlin, it was all just such a nightmare.” When the doctors eventually diagnosed Jack’s syndrome it was another blow to Nina’s dreams for her only son. She added: “Eventually my little Jack was diagnosed with a rare condition called Oberclad Danks Syndrome.
“I’ll never forget the consultant in Temple Street telling me I’d be doing the job of 10 mothers.
“He said Jack may never walk, talk or eat and he may have an intellectual disability too. They basically wrote Jack off, plus I was told the mortality rate is quite high. There was a 40 per cent chance he might die in childhood.
“I just thought, we’ve already had a nightmare year and now I’m being told my child may not have much of a life and might die.”
Desperate Nina felt both herself and her son had been given a life sentence, and after the appointment she gave up hope.
She said: “I wasn’t just a carer, I was a nurse, tube feeding. I thought this wasn’t the life I envisaged for me and my child.”
But then she was thrown a lifeline through the Jack and Jill Children’s Foundation, which helps parents in “extraordinary circumstances” to care for their children. Nina said: “Jack and Jill have been invaluable, I can disappear for a day.
“When they contacted me I remember thinking I chose to be a single parent. I’ll be absolutely fine.
“I think on the first visit I said I’m fine, as far as I was concerned my son was a bit delayed.
“Sandra the nurse manager put it to me very tactfully saying, ‘It’s not for Jack but for you to get a break.’
“Through the extreme highs to the extreme lows Jack and Jill have been the constant thread in my life since the very beginning.”
At the end of the first lockdown in March, Nina was rushed into hospital. She explained: “Jack’s sleep was very bad, he’d wake up at 2 am and wouldn’t go back to sleep until 7am. I think it’s because he wasn’t in school and his routine was broken. I thought I was managing fine.
“I suffer with my lower back, my shoulders and wrist. It all came to a crashing end when I asked my cousin to have a look at my shoulder.
“I had left Jack in my mum and dad’s. When I collected
I just thought, we’ve already had a nightmare year and now I’m being told my child may not have much of a life and might die
him I felt dizzy, I was driving home and had to stop to vomit on the side of the road.
“I fell out of the car. Thank God Jack’s nurse arrived and when they took my temperature, I was freezing.
“I was slurring my words, the side of my face started to droop, they thought I was having a stroke.
“They called an ambulance, they were treating me for a mini-stroke and whisked me to Beaumont. I had scans on everything. They concluded that I was suffering from acute exhaustion and stress. My body had given up.”
The Jack and Jill team swooped in and gave Nina the time to recover in hospital and , stronger than ever, she is hopeful for the future.
With perseverance and hope, brave Nina has helped Jack to thrive as best as he can and he continues to reach some very special milestones in his own way.
She revealed: “He can’t speak but he can communicate. The team at St Michaels House and Child Vision are amazing.
“He is almost blind in one eye, so he attends child vision too. He suffers with his arms too – they’re fused at the elbows so he’ll never have full function of his arms either, so he finds it hard to play with toys.
“He communicates by pointing at things and touches things he wants, Most of the time he shows me what he wants.
“He has a little walker, a little frame and he flies around on that now. That was our lockdown one project. He became very proficient in the first lockdown, he’s getting better at holding my hands and walking.
“We’ve been on a huge eating journey, I even brought Jack to an eating school in Austria.
“The team supported me, we had three attempts at eating, it was incredible to see Jack eating by himself.
“He now has a little bit of Ready Brek in the morning, although he’s on the tube feed all through the night because he won’t take enough food.
“I couldn’t have managed without my family and friends, but they’re not nurses or doctors, it’s stressful to give him all those feeds, one or two people are confident and will do it.
“I got a letter to say my hours that I get from Jack and Jill would be increased for the next couple of months to support me. I just sat down and bawled my eyes out with gratitude.”