No family should be left alone to deal with a child’s terminal illness

When RTÉ gets things wrong, it tends to get it in the neck, not least from this writer. However, sometimes it gets things very, very right, as in an RTÉ/Motive Television documentary, No Time To Die , aired last Monday. (And speaking of getting things wrong, it is past time I made an apology. Last December, I suggested that some RTÉ personnel had tweeted support for a pro-choice march, although only one freelance producer had done so. I was careless, I didn't check sources properly, and I'm sorry.)

No Time to Die is harrowing, as it looks at families with children with life-limiting illnesses. Four families are featured.

Degenerative disease
When Brian and Sharon Thompson discovered that their beautiful baby, Victoria, had a rare, painful and degenerative disease, they were stunned to discover they were expected to take her home, even though they had no medical expertise.

It was only because a friend resorted to Google that they became aware of LauraLynn Hospice. They had to come to Dublin all the way from Moville, Co Donegal, because it is the only children's hospice in the Republic. Their fears of Victoria dying a "terrible, painful death" were averted.

Instead, she was made comfortable and, as Sharon said, “beautiful memories were made”. She died peacefully, aged nine months, during the making of the programme.

The Holland family were shocked when they were told that because their son, Seán, had a rare condition, lissencephaly, they would be better to leave him in hospital and get on with their lives.

Defying all expectations, he is still with them and, at the time of filming, about to make his confirmation. John Holland, Seán’s father, believes it would have broken them if they had taken that advice, but that by ignoring it they have grown in ways they never expected. Seán could not survive without them, and as John said, they will find it hard to survive without him.

The McWade family have particularly poignant circumstances. Their little boy, Leo, has a healthy twin sister, Molly, so they can see every day what he should be able to do. But because he was born with an inoperable heart condition, he was not expected to live beyond a couple of weeks.

The Jack and Jill Foundation helped them for the first hellish weeks but, after a scare when Leo’s heart stopped, the McWades, too, went to LauraLynn.

From feeling haunted and terrified, they say they are still haunted, but no longer fear he will die a painful death.

Instead, they have found it possible to be parents to both their children. And with his beautiful big blue eyes and tufty hair, Leo looks like a boy who enjoys defying expectations, and was very much alive on his first birthday.

Binu Varghesa, who emigrated with her husband to Ireland from India in 2005, also has a daughter with an inoperable heart condition who has completely defied expectations. Although Jovelyn has a tracheostomy which requires constant vigilance, with a homecare package and help from the Jack and Jill Foundation, she is able to go home from Our Lady's Children's Hospital, Crumlin, some of the time. Her family's wish is that she could go home full time.

The documentary was harrowing but, in other ways, life-affirming and humbling for the rest of us, who cannot even begin to process what these families face.

All of the families spoke about not wanting to look back and remember spent days grieving when their child was still alive. As one participant said, it is about living each day, not dying.

We can look at these families and find their courage and endurance inspiring. We can wish them well. Or we can ask questions like these: why is there only one children’s hospice, which has to survive on donations and receives no money from the State? Why does the provision of respite care and homecare packages vary from area to area?

Donations to LauraLynn, or Jack and Jill, or Crumlin and other hospitals, are a good start. But other measures are needed, including lobbying.

For example, both LauraLynn and Jack and Jill support centralising homecare funds. At the moment, every local primary, continuing and community care office receives a budget.

If that money was centralised, not only would it be more cost-efficient, but the discrepancies where a child in one area gets less care than one in another could be removed.

Care from diagnosis
There should be a wraparound service of care from the moment of diagnosis, whether it be before birth or long after. In the midst of their grief, no family should be forced to patch together a network of services or struggle on alone.

When a child or baby is expected to die, parents’ and siblings’ hopes and dreams are in smithereens. But as these families demonstrate, hope can grow in a different way, if their beloved child is treated with dignity and expert care.

For that to happen, we need to move beyond sympathy and admiration, to practical community and State support.