We Irish pride ourselves on how well we deal with death. Old traditions such as the wake, so long as they did not turn into a drunken debauch, had tremendous power to celebrate a life, and to soothe some of the scald of grief.
But we don’t deal particularly well with death when it comes to stillborn children, or babies who only live for a short while outside the womb.
So, sometimes, people cross the road rather than speak to a bereaved mother or father, because they just don’t know what to say. But some people don’t run away. They run towards the family instead.
This week saw the official launch of a not-for-profit organisation that exemplifies this kind of sensitive support. Now I Lay Me Down To Sleep (NILMDTS) consists of photographers and community volunteers who offer the gift of beautiful remembrance photographs to families who have experienced the loss of a baby, or are about to experience it. There are 17 professional photographers (all of whom went through a stringent application process), and three community volunteers who run the helpline from nine to nine, seven days a week, 51 weeks a year.
It is not easy work. Lisa Byrne Kennedy, community area coordinator with NILMDTS, told me that some of the most difficult assignments for the photographers are when a baby is on life support.
How do photographers cope with being present at such a time of raw pain? In a video on The Irish Times website, John Shortt, one of the professional photographers who volunteers his time and expertise, says that his camera is his safety blanket. When it gets too much, he lifts up the camera, and does his best for the baby.
Some people think photographing a dead, or soon to be dead baby, is terribly morbid. Look at the photographs, and the tributes paid by parents, before you judge.
A will to live
Two of my good friends, Anne and Liam, had a baby, Liam Óg, who lived for nine weeks, three days and 40 minutes after birth. The local GP, who was very good to them, stayed with them the whole day that baby Liam died and said he had never seen any patient, child or adult, who had such a will to live.
NILMDTS were not around at the time, but the family have their own photographs, and a ceramic plaque with Liam’s footprints and handprints. Each of these things are an acknowledgement of a life, of the fact that the baby was real, and loved, and is part of the family.
Grief cannot be evaded or hurried. There are events in life that leave you reeling, and reaching for answers that just don’t come. But rituals help. Anne told me that baby Liam’s funeral allowed a woman in her 70s to speak for the first time about the baby she had lost decades before. Organisations like NILMDTS help. The organisation came about in the United States when Cheryl Haggard gave birth to Maddux, who had myotubular myopathy, which prevented him from breathing or swallowing on his own.
Before Maddux died, they called photographer Sandy Puc. As Cheryl Haggard said, “That night was the worst night of my life. But when I look at the images, I am not reminded of my worst night. I’m reminded of the beauty and blessings he brought.”
Incredibly insensitive
Sometimes, these children are treated as if they were never alive at all. Expressions like “fatal foetal abnormality” are incredibly insensitive, as is “incompatible with life”. Although most babies with life-limiting illnesses will die before birth, or shortly after, there is often no way of establishing whether a baby will be one of the less than 10 per cent who make it to a year, or beyond. Sometimes such babies live much longer. Tracy and Tom Harkin’s little girl,
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(youtube.com/watch?v=f9TrQtGVoso), is eight and adored by her family. She attends her special school with joy, including the bus journey there.
The Harkins are members of an organisation called Every Life Counts (everylifecounts.ie). They are campaigning to ban terms like “incompatible with life”. As Tracy Harkin says, “It is such a hurtful, horrible phrase, since it implies that the baby’s life is worthless.”
One Day More is another support group of parents whose children received poor pre-natal prognoses. (onedaymore.ie/) Like Every Life Counts, it campaigns to make perinatal hospice available for everyone who needs it.
Perinatal hospice provides the philosophy and expertise of hospice and palliative care for these tiny patients. The aim of perinatal hospice is to help parents embrace whatever life their baby might be able to have, before and after birth. It should be standard for everyone from the time of diagnosis.
But it will need a change in mindset, from seeing these children’s lives as not as just a tragedy that demands a speedy closure, to one that sees them as human beings with short but incredibly meaningful lives.
If you want to help, NILMDTS needs more professional photographers, and more community volunteers. Contact via nilmdtsireland@gmail.com or 083-3774777.