Devoted new dad Andrew Suttie tried desperately to live up to his status, to be strong, stoic, to provide for his family and support his wife – even though his heart was breaking.
Told one of his baby twins would not reach her first birthday, inwardly his world collapsed but on the outside he remained calm.
Which is why the letter he has written now to daughter Jessica is all the more remarkable in its honesty and openness.
It also marks how far the dad has come in confronting his grief and starting to heal, thanks to the support and work of Children’s Hospices Across Scotland, better known as CHAS.
“I found out on Father’s Day 2016 that Jaclyn was pregnant,” he recalls. “We were delighted and considered ourselves so lucky.”
After struggling to conceive, the couple, from Dundee, had turned to IVF and were overjoyed when they were successful after just one round of treatment. Twins Georgia and Jessica were born eight weeks prematurely, on New Year’s Eve 2016.
But while Georgia thrived and was allowed to go home after three weeks, tiny Jessica, born weighing just 2lb 12oz, was kept in the neo-natal unit.
At three months, the family was given the devastating news that Jessica had Zellweger syndrome, a rare congenital disorder that meant she would not live long enough to reach her first birthday.
Andrew, 35, a physiotherapist at Ninewells Hospital, was overwhelmed. “It was a watershed moment. I couldn’t cope at all,” he says. “I told Jaclyn, ‘I can’t deal with this,’ and I remember crying uncontrollably.”
He phoned his friend Ben and asked him to share the devastating news with all their pals because he couldn’t bear to tell them himself. Those private moments of overwhelming sadness between Andrew and Jaclyn, 33, were all he would allow himself.
He says: “Jaclyn and I felt we had to be strong for other people. We had Georgia there and we couldn’t sit around crying all the time.”
Jessica was allowed home and the trauma of coping with a child with a life-limiting condition took over. “Having a baby is exhausting, having twins doubly so, but having twins when one has profound needs… I don’t how how we did it,” says Andrew.
“We tried to work in shifts, taking turns, and we were always governed by her timetable, living by the clock and waiting for the fearful moments.”
Families caring for a terminally ill child grasp every moment of joy, knowing they are limited and therefore extra precious. But the flipside is post-traumatic stress, marriages that break down, careers that are abandoned.
“It’s such a stressful situation and, unless you have the support of your family, friends and a strong relationship, you can’t sustain it,” says Andrew.
He found out about CHAS and asked to be referred to the hospice, half an hour away from the family’s home in Dundee. Rachel House, in Kinross, is a “home from home” for families.
It has facilities including a hydrotherapy room, large accessible garden and lots of places for relaxing and fun. It also has areas for reflection, bereavement support and care.
It was here, by chance, when Jessica was just eight months old, that she slipped away.
The family had spent a lovely weekend at the hospice and remember their baby girls, with identical greeny-brown eyes and big smiles, lying together in a cot babbling to one another but, soon after, Jessica simply stopped breathing.
“You don’t know what you’re going to do in that situation,” says Andrew. “So we stayed in Rachel House for a few days, where they know whether to comfort you or to give you space – they just get it.”
CHAS helped Andrew come to terms with his grief and express how he felt. “I’ve never been that good about speaking about my emotions. I think a lot of guys are the same,” he admits.
“It’s that typical Scottish male mentality, you keep it all bottled up. I never saw my dad – a former police officer – get emotional in my whole life until he had grandchildren. I’m much better at speaking about it now. A part of that is from being at CHAS, where everyone is so open about how they are feeling.”
The charity asked Andrew to write a letter to Jessica to mark Father’s Day this year.
“Writing the letter was difficult. I wrote it one evening and I couldn’t read it back,” he says. “I was fighting back the tears but I was really pleased they asked me to do it because it was a lovely opportunity to remember Jess and promote CHAS.”
Today, Andrew will be enjoying time with Jaclyn and looking after Georgia, a boisterous and bubbly two-year-old.
But words from his heartfelt letter to Jessica sums up how he feels: “Each milestone that Georgia reaches, I will think of you standing by her side. This Father’s Day, as I am every day, I will be grateful that I was your Daddy and always will be.”
