INTERVIEWING the Revd Mark Birch is a slow business. Ask him a question, and the answer takes a while coming. He makes a face; he sighs; he ponders. The response, when it arrives, is considered but tentative, a work in progress.
It fits the ethos of Helen House and Douglas House, where he is both chaplain and care worker. These two centres, which offer hospice and respite care to children and young people, are “deliberately slow places”, he says.
“They are places in which time spent with people — time building trust — is right at the heart of it. It’s an environment in which you feel people are paying really, really close attention to one another.”
For eight weeks on BBC2, from 9 January, you can watch Mr Birch in Children of Helen House. A BBC camera team spent a year following the children and their families as they dealt with the daily reality of encroaching mortality.
Viewers will enter into the life-and-death struggles of one-year-old Courtney Scarlett, as he and his parents, Leyton and Louise, battle against the severe heart and lung disease he was born with. And they will wrestle with the ethical debate that whirls around 21-year-old Nick Wallis, who suffers from muscular dystrophy and doesn’t want to die a virgin. Theirs are just two of the life stories to be found at Helen and Douglas House, which are, by turn, heartbreaking and inspiring.
The series, like Mr Birch, takes an appropriately measured, adagio approach to the uncovering of what some call “the last taboo”. But this is no fly-on-the-wall treatment or reality-show intrusion; instead, it is a careful piece of observational documentary-making rarely seen on television.
Viewers will enter into the life-and-death struggles of one-year-old Courtney Scarlett, as he and his parents, Leyton and Louise, battle against the severe heart and lung disease he was born with. And they will wrestle with the ethical debate that whirls around 21-year-old Nick Wallis, who suffers from muscular dystrophy and doesn’t want to die a virgin. Theirs are just two of the life stories to be found at Helen and Douglas House, which are, by turn, heartbreaking and inspiring.
The series, like Mr Birch, takes an appropriately measured, adagio approach to the uncovering of what some call “the last taboo”. But this is no fly-on-the-wall treatment or reality-show intrusion; instead, it is a careful piece of observational documentary-making rarely seen on television.
HELEN HOUSE is 25 years old this year. It was founded by Sister Frances Dominica ASSP, OBE, formerly the Mother Superior of All Saints Convent in Cowley, Oxford, home of an Anglican order of nuns, the All Saints Sisters of the Poor.
A trained nurse, Sister Frances Dominica developed a friendship with the parents of a seriously ill little girl, Helen, who lived at home with her family, but required 24-hour care. On occasions, she would look after Helen to give her parents a break.
Helen’s situation highlighted the need for respite care for children with life-shortening conditions. In response, Sister Frances Dominica founded Helen House to look after seriously ill children, and to provide support for their families. It was the world’s first centre to provide respite and end-of-life care for such children.
The centre was built in the grounds of All Saints Convent, just off the busy Cowley Road, hemmed in by ranks of anonymous housing. In addition, two years ago, Douglas House was built to provide a place for “life-limited” teenagers and young adults, whose needs were not being served by either children’s or adult hospices.
The centre was built in the grounds of All Saints Convent, just off the busy Cowley Road, hemmed in by ranks of anonymous housing. In addition, two years ago, Douglas House was built to provide a place for “life-limited” teenagers and young adults, whose needs were not being served by either children’s or adult hospices.
Douglas House, described as a “respice”, has been designed along smart hotel lines, and includes a bar area and terrace. But more unusual is that Helen and Douglas Houses both contain a small but special room, chilled by air conditioning, and containing a simple bed and a chair. In Helen House, the room is known as “the little room”; in Douglas House, it’s “the starfish room”. Both are emblematic of everything the Houses stand for: here families bring the dead bodies of their children to lie at rest until the funeral.
Douglas House, described as a “respice”, has been designed along smart hotel lines, and includes a bar area and terrace. But more unusual is that Helen and Douglas Houses both contain a small but special room, chilled by air conditioning, and containing a simple bed and a chair. In Helen House, the room is known as “the little room”; in Douglas House, it’s “the starfish room”. Both are emblematic of everything the Houses stand for: here families bring the dead bodies of their children to lie at rest until the funeral.
Too often, says Mr Birch, bodies are whisked away after children have died. At Helen and Douglas Houses, families can sit with the children they have loved and supported so intensely. Time is essential, he says: “To deal with something that seems so wrong, so contrary to all our hopes and expectations, something as awful as the death of a child . . . coming to terms with it — even just acknowledging the reality that it has happened — just takes time.”
Families usually stay at the House until the funeral, so that they have ample opportunity to spend as much time as they need, in order to say goodbye properly. “Some pretty powerful emotional stuff goes on in there,” says Mr Birch. “Also, a lot of prayer. I often go in and say prayers with families in the little room. It’s a place where grief can be expressed, sometimes very vocally indeed.”
Of course, this is only the start of the healing process. “Healing is a complicated business, and sometimes it feels a lot more like wounding.” Nevertheless, he says, “being able to refer back to the body, the self-evident fact of their death — it’s a much healthier way of coming to terms with the death of someone you love.”
One of the most affecting, difficult, but redemptive sequences in Children of Helen House is when the camera shows Leyton and Louise Scarlett with the body of baby Courtney, as a noisy children’s Christmas party goes on down the corridor. Louise, oblivious of the crew, picks up and cuddles her child as if he were still alive, speaking to him, tenderly, brusquely, matter-of-factly, as mothers do. And when her tears fall on his face she asks her husband not to wipe them off: “I want them to stay there.”
One of the most affecting, difficult, but redemptive sequences in Children of Helen House is when the camera shows Leyton and Louise Scarlett with the body of baby Courtney, as a noisy children’s Christmas party goes on down the corridor. Louise, oblivious of the crew, picks up and cuddles her child as if he were still alive, speaking to him, tenderly, brusquely, matter-of-factly, as mothers do. And when her tears fall on his face she asks her husband not to wipe them off: “I want them to stay there.”
Sister Frances Dominica calls the room “a place of little miracles”. It serves as a demonstration of how we might live with death, of how we might bear the imponderables of mortality and loss — what she calls being “content in the unknowing”.
Sister Frances Dominica calls the room “a place of little miracles”. It serves as a demonstration of how we might live with death, of how we might bear the imponderables of mortality and loss — what she calls being “content in the unknowing”.
SISTER Frances Dominica says that working with these 250 children and young adults, and their families, people for whom death is an imminent likelihood rather than a distant fear, is an exercise in “the courage to stay in the unknowing with them”. Because mystery is a fact of life here.
Thirty-six-year-old Mr Birch has a scientific background. He was a vet before he was ordained, and Chaplain of Exeter College, Oxford, before he joined Helen and Douglas Houses as chaplain.
Empirical science and forensic theology give way when the big questions invade your family, however. He describes a recent encounter with parents “who are angry with God and wonder how they can ever trust him again”. Their child had suffered so much that they had “prayed very hard that their child die sooner rather than later, and suffer less rather than more. They felt that God had let their child suffer for too long.”
In the face of such anguish, “you feel pretty inadequate to give a response,” he says. All he can do is to acknowledge the anger, and the darkness in which they feel they’re sitting, and simply accompany them. He says he has learned from the families here that “The light is born in the darkness, and that sometimes all you can do is sit and wait in the darkness until the light comes.”
It may be a surprise, but, he says, “In most of these situations, the people I’m speaking to don’t actually think that I can give them an answer.” But there is, none the less, hope.
“The word that seems to encapsulate it for me is ‘intensity’. I’ve never doubted that God is present in the situations of the families and the children and the guests. There is an intense and dark mystery around suffering, and it feels like a huge privilege to be trusted to be there with people who are in that dark intensity. In those moments, the love is so intense for the child or guest. For me, that is a manifestation of the divine love.”
THE HINTERLAND of death and suffering is a hard place for a priest to patrol. But Mr Birch is prepared to live with the questions it raises. “This work doesn’t make me doubt God: it makes me doubt my understanding of God. I realise less and less that I have him all sewn up.”
But, he says, he wouldn’t be anywhere else. “There is nothing more holy and mysterious than that boundary between life and death. I find God’s presence there both puzzling and compelling. It’s a huge privilege to be there.”
It is this slow and attentive fellow-travelling with the children and their families that is a feature of Helen and Douglas Houses. The commitment of the team is not just to see people through death, but to provide companionship and support from the moment of diagnosis, and then for as long as it takes after death.
This can lead the team into uncharted territory, as was certainly the case when 21-year-old Nick Wallis decided he wanted to have sex before he died. Nick had been unable (largely owing to his muscular dystrophy) to form a relationship with any of the young women he had met. He thought a prostitute might be the answer — but that would have needed support from his nurse at Douglas House.
Nick’s request posed a significant ethical dilemma for a Christian foundation. You will need to see Children of Helen House to discover the outcome, but Mr Birch was pleased with the way the team approached it. “I thought it was enormously courageous. If you are trying to support young people, then it would seem very false to say: ‘We’re going to offer you holistic care and support, but we don’t do sex.’ That would be almost a dereliction of care.”
He is happy with the outcome: “The result is that Nick knows that this is a place that was prepared to stick with him, and not throw up its hands in horror.”
He is happy with the outcome: “The result is that Nick knows that this is a place that was prepared to stick with him, and not throw up its hands in horror.”
Such individual continuity is key at Helen House. “Frances’s mantra is: ‘Let people do it their way.’ So, for instance, we don’t say grief has to follow a particular course. Our job is to be the sort of place where people have the permission and space and time to do what they want. Even 25 years down the line, we don’t have any expectations that people will necessarily be reconciled to the death of their children.”
Talking of his own work, Mr Birch says: “The support I offer as part of the caring team is as another human being who helps with the care, who listens and does whatever they can. But as chaplain, I can pray with people, if that’s appropriate.”
“Appropriate” undersells his pivotal ministry in this unique house, and the work of Helen and Douglas House. As you will see.
Children of Helen House starts on 9 January at 10 p.m. on BBC2.