Page 12, 5th February 1993

5th February 1993
Page 12
Page 12, 5th February 1993 — Pints of Factor Nine next to the milk
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Pints of Factor Nine next to the milk

Charterhouse Chronicle by Carmel Fitzsimons G0 TO the fridge in Fran Dix's kitchen and all family life is there. The magnetic letters that slide down the fridge door spelling out lop-sided children's names. the blue tac that just about holds up the latest potato print painting, the sticky memos for school appointments. But open the door for a pint of milk and you will find the bottles of blood clotting agent Factor Nine which keep this family alive. not pints of semiskimmed.

Frans two sons. Jack, four, and George, one, suffer from a form of haemophilia called Christmas Disease. We met her in her terraced house in London last week, when I was researching an article on pre-conception sex selection for a Sunday broadsheet newspaper. Fran. a 32-year-old social worker, is an articulate young woman who put a very urgent case against sex election. even for families dealing with the threat of genetically inherited illnesses. Coming from a family of girls she had no idea that she was a carrier of Christmas Disease, which means that with every pregnancy a son has a 50 per cent chance of inheriting the blood-clotting disorder and a daughter has a 50 per cent chance of passing on the condition.

She could have decided not to have more children after Jack was diagnosed. but she felt he needed a sibling. She could have opted for a test which told her the sex of her second child and had a termination if it was a boy, but after having left one child inside her grow to full term. it was unthinkable. And. she says. even if sex selection had been available. she would not have asked for it.

"I am one of those people who hate medical intervention. I prefer aromatherapy to paracetomol. I have to' accept that Jack's injections of the clotting agent Factor Nine are what keep him healthy but that does not stop me loathing them. So I would always have found intervention in conception of a child very difficult." she says.

"But I become very angry when people say it would be alright if we had a girl. I know what its like to be a carrier. Its putting a Damocles Sword over her head. It is as if there is an assumption that because it is not the women who bleed we do not suffer".

Her point of view is a fascinating one and I was glad to be able to help in ensuring it would be heard. But one of the most disturbing elements of our meeting was the sense that this was the first time that she had felt permitted to talk about her feelings. There has been so much concern with managing the illness that how the manager coped had been largely ignored.

People would ask her how her sons were. Or make cut de sac comments along the lines of how difficult it must be. The only answer that she, as an unselfseeking person. could make was to smile bravely and demur, reassuring the listener that everything was "fine". During our interviews Fran surprised herself by how much she cried. She apologised. saying she had no idea how emotionally bruised she was.

"I don't think my family really knew really how to cope with me being a haemophilia carrier", she explained. "I was always the girl who was good at coping, the one who left Norfolk to live in London, who had travelled the world. who listened to the other sister's troubles with their boyfriends. They had no experience of me needing help and I think they found it hard to comfort me."

People around her did not appreciate the constant emotional drain. "With a child in pain you try to ease the distress, you rub it better or whatever. With Jack you take him to the hospital and hold him down while he screams. Nurses poke around trying to get the needle in deep enough."

"I feel as if I am torturing him but all I can do is hold him down. stroke his hair and call him my poor baby.. He can't understand why he needs to suffer pain in order to get better. He is only four. I often wonder if he will hate me for hurting him so much."

"Being a mother of a suffering child is like haemophilia itself, once you start to talk about how terrible it is. it's like a bleed that won't stop. It's even too painful for Paul and I to talk about. It's like being in prison or having a bomb inside you. How can you torture your child every week or watch him playing wondering if he will one day die of Aids through contaminated Factor Nine, without your heart breaking?"

Fran does not go exposing around this heart-break. She works part-time, she is a funloving mother to her two boys and she supports the Haemappeal by the Royal Free Hospital in London, raising money for a haemophilia research centre.

Not everyone facing difficulties such as Fran's wants to discuss their hardships, and its often inappropriate to probe too deeply. But after our interviews I came away with a sense that maybe we all should guard against too much English reserve: it should not take a newspaper interview to undamn the tears.

suffer little children to come unto me is a text which should be writ large on every priest's cuff, so he can reread it frequently. It should also be engraved on the pews in front of all stuffy elderly folk, who having reared their broods think that the time has come for some serious piety, and try to achieve it by gotgon glares at any child attempting to enliven Mass with the theme tune from The Little Mermaid.

As that singing child is probably mine I will take this opportunity to say that glares, stares, sniffs and tutters have no effect on four-year-olds. The only person they affect is the mother.

My local church does not have a cry chapel, which is a hideous name for a good idea. At least we get to hear some of the Mass, undistracted by the older generation and their long-suffering sighs.

What my local church offers is a "family" service which is standing room only and packed with kids. There are nice hymns and older children get taken to the hall during the sermon, to colour in holy pictures.

But the Mass itself is an hour long, so if your children are too young to join the colouring set you have to stew in your confined pew with an active one year old and a humming four year old for an experience which must be a foretaste of Purgatory.

The Catholic Church wants its young Returners. The new parents who have decided. maybe after 15 yours of absence. to come back to Mass and bring their babies with them. Modern parents do not spank their children if they are naughty, and we won't tolerate being told that parents in the past were so scared of the priest they terrified their children into good behaviour.

I sometimes take my one-yearold to a drop-in playgroup held at a church in West London, which is not Catholic and which puts Catholic response to dealing with families to shame. The church is open every morning and children cycle up and down the aisles to their hearts' content.

The vicar realised that day after day this huge place was empty and that it was nonsense to see it as a shrine in silence. He has now filled it with happy sound of children safely at play. His Sunday family services are mercifully short and he provides a creche, bountifully staffed and stuffed with toys. I am not planning to decamp but I know where my four year old Singing Mermaid would rather be.

Fr Ronald Rolheiser's column appears this week on page 5




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