Sabina Higgins, wife of President Michael D Higgins, has led a walk in aid of FirstLight, an organisation that supports parents who have lost a child suddenly.
Formerly the Irish Sudden Infant Death Association, FirstLight provides a bereavement support service to family members, professionals and communities who experience the sudden loss of a child or young person.
Tomás Fay and Tatiana da Silva Souza told their story before they joined around 100 people for the walk in Anne’s Park, Raheny, Dublin.
Their daughter Lorena was born at 8.32am on July 31st, 2016, following a healthy pregnancy and clear scans. They were jubilant. “It was a great morning and we were delighted, over the moon,” Mr Fay said.
But the day “turned to disaster” in the afternoon. “We were brought into a private room and sat down by a doctor and one of the chief midwives. We were told she [Lorena] had Down syndrome, which was a massive shock to us.
“Then we were told she had TAM [transient abnormal myelopoiesis], the worst transient form of leukaemia. They didn’t know at that stage where she was at health-wise, so we just had to wait and see. We had to deal with the shock of Lorena having Down syndrome first.
“We just sat ourselves in a room. We were just counselling each other, grieving for the daughter we had been expecting to have. Then Tatiana just sat up in the bed one day and said, ‘Look, we need to get behind our daughter. She’s fighting for her life in there.’
“That was it. We said we’d leave our emotion outside the room and just give her love and good moments.
“We decided that Lorena would know all about love, because we knew that her health was deteriorating,” Ms da Silva Souza said. “We said we had to stick behind our daughter and give her as much love, joy and laughter as we could.”
Almost three weeks after Lorena’s birth, Tatiana and Tomás were still in Our Lady’s Children’s Hospital, Crumlin, with her. “I thought she was doing very well, kind of in denial,” said Mr Fay.
“The doctor asked how we thought she was doing. I said, ‘Ah, she’s okay, she’s just having a bad day.’ But Tatiana said, ‘No, that’s the worst I’ve seen her’.
“Unfortunately the liver function wasn’t enough. They were hoping she might live long enough for the liver to repair itself, but unfortunately she didn’t. She passed away at 20 days old.
“It was pretty shattering. At the start it was just the shock really. The aftermath then is just a nightmare. Our whole lives and perspective has changed. Family and friends have been a great support but they can only do so much. They don’t know what to do.”
Mr Fay described his and Tatiana’s “mission” as being to help bereaved parents and other family members, as well as advise friends of those bereaved not to be afraid to confront the subject.
“The advice I have for friends is to go against your instinct and knock on the door,” he said. “Get people out of the house and talking about it. Don’t be afraid to bring up the child’s name. Things like that.
“When someone has a baby, the first reaction is to talk about the child. Whereas bereaved parents don’t get that opportunity really. Why should they be any different?”
