‘Such a big smile for such a little man’: A story of remarkable support during a difficult time
By Amanda Cassidy
26th Sep 2023
26th Sep 2023
Two-year-old "little rogue" Jack loves Fireman Sam. His parents Joe and Michelle say despite his health complications, he's always smiling. IMAGE speaks to the couple about Jack's journey, and finds out why support services like LauraLynn means so much to them.
It took Tralee-based Michelle and her husband Joe seven years to get pregnant, so they were absolutely over the moon when they saw the positive test.
“We were just ecstatic,” remembers Michelle, who worked as a marketing manager for a hotel in Kerry. “After everything we’d been through, we expected things to run smoothly. Then like a bolt out of the blue, we got this news. It was devastating”.
Shock
After the 21 week scan in University Hospital Kerry, Michelle and Joe, who is a bricklayer with Kerry County Council, were told there might be a problem. “It was a whirlwind, that’s the only way to describe it”, Joe says. That scan showed fluid and enlarged ventricles in his brain and holes in his heart.
We were sent to Cork University Hospital for further scans and from there to Holles Street and the Coombe hospital. They found Jack has a horse shoe kidney and severe reflux in his bladder. He was diagnosed with severe IUGR too, Intrauterine growth restriction. We were completely blindsided. In CUH they scanned us every other week.
One day, on the way to a routine scan, we got the call to turn around and pack a bag, they were admitting us.
Baby Jack was delivered at just 27 weeks. The doctors had warned the couple that there was a chance he could be stillborn. “ We have a lot to be thankful for”, points out Michelle, “because it might have been a different story entirely. When Jack was delivered by emergency section, he weighed only 690 grams, and was whisked away to the neo natal intensive care unit straight away. “We just felt so lucky to have him.”
A nurse said to us recently, he has such a big smile for such a small man. It’s so true.
“We spent 6 months in the NICU in Cork University Maternity Hospital, sitting beside his incubator, unable to hold him for the first few weeks which was so heartbreaking and to watch this tiny but mighty little baby overcome a lot of serious health complications, infections and multiple transfers to Temple Street and Crumlin to reduce the swelling on his brain, feeding issues, chronic lung disease and kidney issues.”
Complications
At five months old, Jack was transferred to Crumlin Children’s Hospital for pulmonary heart surgery but there was a complication.
“We were commuting up from Kerry”, Michelle explains “we rang from airport departures and they said Jack had arrived and all was good. An hour later, we got off the plane to a phone call that he had taken a bad turn. That trip from the airport to the hospital was the most frightening trip for us”.
The couple rushed to their sons bedside, they were told he had a cardiac arrest shortly after arrival, the doctors worked on him and he was taken to the Paediatric Intensive Care Unit, there, 3 days later he went into cardiac arrest again.
“All the alarms started going off and the doctors and nurses were running towards us, a nurse ushered us to the parents room and explained what happened and said quietly to us, we should think about getting him christened, if he has a third cardiac arrest, it could take him.
We were devastated.
We agreed to the christening and went to the city centre to buy a christening candle and a shawl, we were crying so hard, we couldn’t even talk. It’s not how you plan on Christening your child. It was an intimate ceremony with Joe, myself, Jack, his nurse and the chaplain at his bedside in the PICU. It was also so hard for all our family and friends back home in Tralee, feeling so helpless to our situation.
Thankfully Jack turned a corner, we were transferred back to CUH two weeks later and spent 3 months in the Ladybird ward. On 2nd August, 2022, Jack finally crossed the county bounds for the very first time. We spent 4 months in UHK, whilst there we had another trip to Crumlin to put in a pej tube for his feeding issues and to Temple Street for a vesicostomy to relieve the pressure in his kidneys. We finally got home on the 23rd December, after 13 months in hospitals. Santa gave us our Christmas wish.”
“He’s so full of fun,” laughs Joe, “if you meet him and didn’t read his file, looked beyond the pej feeding tube and oxygen, you wouldn’t think there was anything wrong with him. A nurse said to us recently, he has such a big smile for a small man, and it’s so true. At all the hospitals everyone says the same, he’s such a happy child for all he has to go through.”
Support
But it was the support of LauraLynn that has made a huge difference to this family’s lives. “Until you’ve been in the thick of it,” admits Joe, “you don’t realise what people are going through. It’s an eye-opener. Having a child with complex needs is really challenging and you need all the help you can get.”
LauraLynn is Ireland’s only Children’s Hospice providing palliative and hospice care and support for children with life-limiting conditions and their families from all across Ireland. Community Team Lead, Marie Lynch, who works out of Mallow says it’s not only about end-of-life care.
“Children’s palliative care is about so much more than hospice care. It’s about giving the best life possible to these children and their families,” she explains. “That includes making important memories and really giving them the best quality of life.
LauraLynn, provides a range of services including, symptom management for children, music and play therapy, psychological support, family and sibling camps and short breaks. We try to bring as much joy to the patients and their families as possible. ”
We rushed into the city centre to get a christening candle and a shawl. I was crying so hard I couldn’t even talk. This wasn’t the way we wanted to do it.
Demand
Since opening in 2011, LauraLynn has cared for over 680 children and their families, with more than 500 families currently availing of care & supports. This figure also includes bereaved families who avail of bereavement supports and attend LauraLynn events.
In 2022, following the establishment of the Mallow-based community team to provide care and supports across Cork and Kerry, LauraLynn saw a 139% increase in referrals across the service with a 100% increase in the Cork and Kerry region alone. The Mallow based team extended their reach to support families in Limerick in May of this year with strong demand for services coming from families across the county.
Recently, the charity announced the expansion of its LauraLynn in the Community service with a new base in Ballinasloe, Galway.
Similar to its Mallow and Dublin community-based teams, LauraLynn will have a multi-disciplinary team working out of Ballinasloe to provide care and supports to whole family units, including parents, siblings, grandparents, and the wider family across the Midlands, West & Northwest of the country. Medical care will also be available in the child’s home along with additional palliative care supports including Music Therapy.
Comfort
“It’s such a privileged to go into people’s homes and treat these families in their own comfort place,” explains Marie Lynch. “They can open up so much more if they are struggling. We aren’t just there for the child with complex needs, we offer respite and support for the entire wider family too.”
“We’d be lost without the nurses. I call them our angels.”
Michelle says that the nurses and staff in LauraLynn have become part of their family. “It’s such a fantastic service to have. When you are first told, “we’ll refer you,” it was all new to us. They came out and met us at our home and put us at ease. Sometimes you can just go to bed for a couple of hours knowing he’s in safe hands. We have fabulous family support, but trying to explain the meds and feeding can be daunting sometimes. We’d be lost without the nurses. I call them our angels.”
Joe says that they’d been nervous about the connotations of being involved with a hospice.
“I had expected to be upset when we went to Dublin to LauraLynn for respite. I was bracing myself. Yes, the children are sick, but it’s not a cliché to say it’s one big happy family.” Michelle agrees. “It’s such a comfort for us to know that Jack is in safe hands. He does arts and crafts, the messier the better. They helped him make cards for us with his handprints and do sensory story time. It’s not like a hospital environment. We are so pleased with the expansion so other families can get this help too, possibly in their own homes”.
In a touching admission, Joe and Michelle describe Jack’s situation as “a journey we are meant to be on” and says they’ve met some amazing people in the two years since his birth.
“Jack was given to us for a reason.” Michelle says. “We could have lost him. To go through what he’s gone through and going through daily, he takes it in his stride, we’re so proud of him. It’s like I always say, he seems to look at you as if to say; I’ll do my best, but please give me a hand when I need it. ”
The family are now waiting on Jack’s genetic tests, which they hope to receive in the coming weeks. “We are taking it day by day. We’d like to know what Jack’s future will be like. At every appointment we ask what his outcome will be and nobody can answer you. Hopefully whatever it is, won’t be too challenging. But we’ll cross whatever bridge we have to cross.”
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