Jo Synnott celebrates her son’s short life by fundraising for the Jack and Jill Foundation

WHEN JO Synnott went to see her GP at the age of 43 with what she thought were symptoms of the menopause, she had no idea just how radically her life was about to change.

With her only child, Amy, in university and living in her own apartment, Synnott and her partner, John Nolan, were enjoying the freedom to indulge their love of travel, from long-haul trips to last-minute weekend breaks on the Continent.

So they could hardly believe the news that she was pregnant again, after 20 years, and that Nolan was going to be a father for the first time.

“Needless to say we were in shock, but by God we embraced the pregnancy and had an amazing nine months,” Synnott says. “No complications.”

She was two weeks overdue when she went into Holles Street hospital on May 1st, 2007, to be induced and after a short labour gave birth to a baby boy they named Sam. But within an hour he was taken to intensive care with breathing difficulties.

At first the medical staff suspected Down syndrome. “We could live with Down syndrome,” she says. “We could live with anything as long as we had Sam.”

They were elated when he was given the all-clear on that and they were able to bring him home to their Blackrock apartment. But within a couple of weeks he was back in intensive care, fighting meningitis strep B.

It was while he was in ICU, that an MRI scan revealed he had the condition holoprosencephaly (known as HPE), a birth defect that occurs during the first few weeks of life inside the womb.

“The front lobe of his brain had never split,” explains Synnott. They were told he would never walk or talk. As part of the condition, he also had a rare form of diabetes resulting from a lack of the pituitary hormone that regulates the kidneys.

“That is where his journey began. We knew the road ahead for Sam was not going to be an easy one,” she says. And they were both determined to be there for him every step of the way.

“When Sam was first diagnosed, all we could think about was getting him home.” The care he received at Temple Street hospital was “amazing”, she acknowledges, “but the loneliest place in the world is a hospital ward with your child”.

He needed 24-hour care and they faced the choice of going back to work so they could pay for nurses or doing it themselves. They could not bear to leave him. Both of them temporarily abandoned their jobs – she was working for Chanel in Brown Thomas and Nolan is an accountant. However, there was no way they could do it all on their own.

They were put in touch with the Jack and Jill Children’s Foundation, which provides support and direct funding for respite care to families who have children with brain damage and who require intensive home nursing.

By paying for 20 hours’ nursing a week, “Jack and Jill gave us precious time so that we could have our son at home full-time”, explains Synnott.

A team of seven nurses was involved in Sam’s care, which was complex and also necessitated frequent trips to hospital. But when he was nine months old, staff at Temple Street advised that it would be in Sam’s best interest to stay at home.

“So he was able to be a baby full-time and not a patient,” is how Synnott puts it, as we sit in the luxurious surroundings of the Four Seasons Hotel in Ballsbridge, where she is on first-name terms with the staff.

She and Nolan started to bring Sam here in the early days – when he would “get out on bail from hospital for a couple of hours”, she says with a smile. It soon became a favourite place to take him, away from the risk of infection which other children posed, and a source of peace and comfort which they all needed.

Synnott and Nolan would wrap him up in a blanket they had made for him and bring him here, where he “would be in his element” and particularly loved to hear the piano being played.

“With or without money, he was going to get five-star treatment and by God he did,” says Synnott. “On his first birthday he got the presidential suite in Waterford Castle. He was everywhere, Mount Juliet, the lot. Our credit cards went up to like 30 grand – we’re slowly paying them off.”

Having stopped work, they had remortgaged their Blackrock apartment and Synnott sold her new Volkswagen Beetle. But they do not for one moment regret spoiling Sam and making the most of their time together. He was a happy, giggling baby, she says, who adored classical music and loved to be read stories. But he had bad weeks too, when they did not take him out and just sat at home, holding him.

On those weeks, the nurses could be the only people they would see.

“You would be waiting for the nurse to come in, to chat and for her to reassure you. Their comfort and support was amazing.”

Out of gratitude for the work of Jack and Jill, they decided to host a fundraising lunch (see panel) in the Four Seasons in May 2008, at which Sam was guest of honour in a tuxedo suit made especially for him by Louis Copeland.

“He arrived, smiling, flirting in his tux and five weeks later he flew away,” she says of her “mayfly” – her May-born son who was to have a very short lifespan.

Synnott pulls out photographs of an adorable-looking baby boy with large, chocolate brown eyes, just like hers. “Look at the wisdom in that face,” she says with a sense of wonder.

“The love he brought into our lives was just unbelievable. We are so blessed to have been given him – even if it was just a loan and he was never going to stay.”

The Thursday and Friday before Sam died, she could see a difference in him.

“It was like he was reflecting on the life he’d had. I’d say, ‘Hey, what’s happening here today?’ and he’d put his hand up and touch you,” she recalls, her voice faltering.

Even though he needed morphine towards the end “we never ever wasted a minute thinking about dying”, says Synnott, “we were just too busy living.” He seemed much more comfortable on the Sunday night, when they had no nurses in the house and it was Synnott’s turn to stay up with him.

“John went to bed at half one and I made a cup of tea. I remember saying to John, ‘Sam is in an awful hurry’”– referring to his breathing. She picked him up out of the cot “and he snuggled into me”.

“Then I felt he was a little bit uncomfortable and put him back in and held his hand.”

Soon she lifted him back into her arms and sat in the rocking chair. “I called John and I said, ‘I think Sam is dying’. I could feel his whole body relaxing into mine. I looked at his little eyes and just closed them. Although I was saying the words, I never believed them.”

The days, weeks and months after those early hours of June 16th, 2008, are a blur for Synnott and Nolan. Sam’s death also devastated his loving sister Amy.

“I couldn’t go home,” says Nolan as he joins us at the end of the interview. “I think I was trying to run away.”

Synnott says, “The silence, we will never forget.” In their grief, they headed off travelling and it was about a year before they could start to function again.

She and Nolan married in November last year. “We made a promise to Sam that we would always mind each other – and Amy as well, that goes without saying.”

Synnott recounts small incidents that have reassured her that Sam is okay. “I would not be over-religious,” she explains, “but we have had such amazing little signs and for other parents I hope it gives hope. Really and truly this happened to us and we would be very logical people.

“When a child dies you will never be the same again but you would never want to be,” adds Synnott.

“Sam brought a lifetime of happiness in 13 months. He also brought the most amazing people into our lives and changed our lives forever.”

swayman@irishtimes.com

SAM’S LEGACY: RAISING PRECIOUS FUNDS TO HELP SUPPORT BABIES LIKE HIM

SAM NOLAN’S family are determined that part of his legacy will be to help other children, so they are continuing to hold an annual fundraising lunch for the Jack and Jill Children’s Foundation in his honour.

Now in its third year, “Sam’s Lunch” will be on Friday, May 14th in the Four Seasons Hotel, Ballsbridge. Up to 170 guests are expected, a trebling of the number who were there with Sam at the inaugural lunch three years ago.

“This event enables us to celebrate Sam’s life,” says his mother Jo Synott, “and to raise precious funds to help support more babies like Sam in every county and every community in Ireland through Jack and Jill.”

It was the short life of another little boy, Jack Irwin, which was the catalyst for setting up the foundation. When his parents, Jonathan Irwin and Mary Ann O’Brien, wanted to take their seriously brain-damaged baby son home from hospital in 1996, they found there were no services to support them.

Their experience of round-the-clock nursing at home with the help of a team of women living locally convinced them that this was an ideal way to care for children like Jack, who was 22 months old when he died.

Jonathan Irwin has been the driving force behind the foundation, which has helped more than 1,100 families with home respite care since 1997.

But with less than 18 per cent of its budget coming from the Government, it needs to raise at least €3 million every year.

Tickets for Sam’s Lunch are available through Jack and Jill at a price of €120 per person or €1,200 per table of 10. See jackandjill.ie or phone 045-894538 for more details