You won't have children will you?

Morgan Brenton-Davies is a bright and engaging five-year-old.

He has lots of friends, loves Bob the Builder and playing with his train set. But the one thing he really wants is a brother or sister.

And that is not an easy decision for his parents to make.

Morgan has a rare and serious genetic condition called Ehlers Danlos Syndrome (EDS).

"Wanting to have a child is a very strong emotion"
Jennifer Brenton-Davies

All the joints in his body dislocate so frequently, it makes tasks such as walking or holding things very difficult.

His father, Dean, has given up work to take Morgan to his frequent hospital and physiotherapy appointments.

EDS comes in several different types and, because of the extent and severity of his symptoms, doctors still aren't sure which one Morgan has, and what the chances are of his parents having another affected child.

They have been struck by how judgemental some people have been about what they should do.

"You do get family members that were... surprised that we would consider having more children." says Dean.

"That's a bit upsetting really."

'Easy for others to judge'

But those views are not uncommon.

John Harris, an ethicist at Manchester University believes we have "moral reasons to avoid bringing inherited conditions into existence where we have that choice".

But what exactly does choice mean?

Scans and blood tests on the developing foetus can sometimes detect when things aren't quite right, but the only way to guarantee a child free of a particular condition means terminating an affected pregnancy.

Many people find the idea of abortion difficult - and it can seem like a very personal judgement about the quality and value of that person's life.

But EDS, like many conditions, cannot currently be detected before birth.

Jennifer and Dean therefore have to decide whether to take the chance of having any more children, as they would have to wait until the baby was born to see if the gene had been passed on.

Jennifer says: "I think it's easier for other people to judge without having to really think about it.

"Wanting to have a child is a very strong emotion and it's not something we take on lightly either, we've really thought about it.

"We've also talked about the possibility of living with the decision not to have more children and that's just as hard, you know, could we live with it?"

For Dean, the not knowing, is difficult.

"I wouldn't want to get to the age of 60 and then start thinking well what would have happened if we'd had another child."

Jennifer decides to find out as much as possible and takes advice from Professor Mike Pope at London's Chelsea and Westminster hospital.

After going over the family history he concludes that the chances of Morgan's condition recurring in another child are around 10%.

"It's not insignificant," he cautions, and asks Jennifer how she'd feel if she were told she had a 10% chance of winning the lottery. 10% in that scenario would sound quite high odds.

Jennifer and Dean have a difficult decision to make.

"If we have another child like Morgan then we'll love him like Morgan," she says. "We'll just have to live with the guilt."

'My Baby: A Life Worth Living' will be broadcast on BBC Two at 2320BST on Wednesday 24 May, 2006.
It was originally shown on BBC Four on Wednesday 26 April.

RELATED INTERNET LINKS:
Ehlers Danlos Support Group
Contact a Family
Antenatal Screening Web Resource
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