Should my hereditary disability stop me having a baby?

 

Jono and Laura's genetic dilemma

For Jono Lancaster, who has Treacher Collins syndrome, the decision about whether to have a baby or not is agonising.

At the age of 26, Jono is happy with how he looks, but the genetic disorder that affected the way his facial bones developed in the womb has caused him years of anguish.

His condition means he has no cheekbones - so his eyes droop downwards - and he has problems with his hearing, so has a bone-anchored hearing aid.

It has resulted in years of bullying, several operations and numerous hospital visits. It also led his parents to give him up for adoption 36 hours after he was born.

But perhaps the most vital factor for Jono and his long-term girlfriend, 20-year-old Laura Richardson, is that it is also hereditary, so any child Jono fathers naturally has a 50% chance of having Treacher Collins.

Find out more

  • So What If My Baby Is Born Like Me? will be broadcast on BBC Three at 2100 BST on Tuesday 19 April 2011

Jono says until he met Laura, he always assumed he would adopt.

"It worked really well for me, and giving a child a second chance, I think that's brilliant.

"But Laura thinks she will have those instincts of really wanting to carry a child, and she's worried that she might find it hard to look after someone else's child - or that the child will just want to find its natural parents.

"Plus she really wants our child to be 'our' child. And I really want to look after her when she is pregnant, for her to be on the sofa, or for me to run downstairs at 2am when she fancies a pickle."

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The big debate in my head is how can I knowingly put my own child through potential suffering”

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He says ruling out children is not an option.

"I've always dreamed of being a daddy. I crave father and son moments - my adoptive mum was absolutely amazing but I never had a father figure in my life, and that's something I really, really want. I want to do the school run, take my child to dance, gymnastics or football - whatever they want."

But for the couple - and particularly Jono - the thought of having a child naturally opens a minefield of morals, emotions and self-questioning.

"Knowing that there's a good chance of passing your condition on to your child. It scares me and I question whether it's the right thing to do.

"The big debate in my head is how can I knowingly put my own child through potential suffering," he says.

To add to their predicament, Treacher Collins syndrome - which is thought to affect up to one in 10,000 people in the UK - varies in severity, but there is no way of predicting how severely a child will be affected.

Jono Lancaster and Laura Richardson Jono and Laura have been together for four years

While some sufferers have problems with hearing and facial features, others can be born unable to breathe.

"I've met a girl that needed a tracheotomy and 24-hour care, and another boy had to have his jaw extracted - which means putting a brace on every morning and and twisting it, which breaks the jaw - how can I knowingly put a child through that? I'd feel so guilty."

But Jono says if they decide to have a child naturally, "abortion is not an option" for him.

"I want to make the right decision. Right from the very start. So if I decide to have a child naturally, we go through the whole thing. Not just give up on it halfway through."

Because doctors have been able to locate Jono's abnormal gene, the final option that Jono and Laura are considering is IVF with pre-implantation genetic diagnosis (PGD).

What is Treacher Collins syndrome?

  • A genetic disorder also known as Treacher Collins-Franceschetti syndrome or mandibulofacial dysostosis
  • Facial bones do not develop as they should in the womb and babies are born with characteristic facial features
  • Sufferers often have problems with hearing, breathing and eating
  • Most children pass developmental milestones, such as starting to walk and talk, at the usual time and are of normal intelligence
  • Many need specialised hearing aids or speech therapy
  • About one in every 10,000 babies in the UK is born with Treacher Collins syndrome

Source: BBC Health

The procedure is controversial - both ethically and from a religious point of view - because it involves testing embryos for genetic disorders before implanting an unaffected one in the womb.

Some disabled groups also argue it harms their chances of equality and understanding. Ian Macrae, editor of the magazine and website Disability Now, says he would never condemn an individual for making their own choice, but he had significant concerns about screening embryos.

"It re-enforces the stereotypical notion that disability per se is a bad thing that should be excluded and that disabled lives are intrinsically less valuable.

"Also, if you make the comparison with ethnicity, which I know is not always helpful, and you want to start doing this to people of colour, then there would be, quite rightly, an outcry. For me, disabled people are part of the rich mix of a diverse society."

We want to be working towards a society that can accommodate the range of needs that people have, rather than getting rid of the people, he says.

Macrae himself has a congenital cataracts condition that could have been passed to his children but he says he would not have agreed to screening, had screening been available.

For Jono, it is the moral issue that is particularly poignant.

"When I first heard of IVF PGD I had this kind of moral dilemma going on in my head, that if my parents had chosen to do it, I wouldn't be here today.

The wider issues

There are two main issues. The first is whether it's right to destroy an embryo or foetus with a condition that isn't life threatening to have another child, or whether it is permissible to destroy human life in order to have children.

Since we allow 100,000 abortions every year in the UK I don't think we place a very high value on human life, so I don't think we can have strong objections, and there shouldn't be laws to prevent people from doing so.

The second issue is what kind of society do we want to live in?

By making these sorts of choices are we discriminating about people and expressing negative attitudes because we are saying this condition isn't worthy of life?

Julian Savulescu, professor of practical ethics at the University of Oxford

"Then there are all these other amazing people in the world with genetic disorders, I think the world is a better place because they are in it. I'd feel in some way like I'm insulting or disrespecting them, and that's what I'm struggling with."

He also feels guilty that Laura would bear the brunt of the procedure.

"She'd have to inject the hormones, have the eggs taken out - it puts her under so much pressure and that frustrates the life out of me because this is my condition."

Although Jono thinks having a child through IVF PGD is probably best option for their child, he says he is still goes through an "emotional rollercoaster" when he thinks about actually having to make a decision.

"I could argue with myself all day - there's an answer and an argument for everything."

Dr Christine Patch, a genetic counsellor at Guy's and St Thomas' hospital, says it is important for couples like Jono and Laura to understand the facts, talk through choices and make the decision that is right for them - taking into account their culture and personal beliefs.

"It's very hard for people with the condition themselves - they are the ones that know much better than anyone else how it is to live with it.

Jono Lancaster Jono thinks there is an argument for and against every option

"Many will be conflicted, they may quite rightly see themselves as being able to fulfil a normal valuable role in society, so thinking about not having a child the same as them is difficult for them emotionally and psychologically."

Jono agrees that understanding his options has been a huge step forward and will allow him to move on.

"Starting a family should be a romantic and exciting time - and hopefully by the time we are ready to have children, we'll be able to make our dream a reality."

 

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  • rate this
    +1

    Comment number 224.

    I find it interesting how some people so quickly reduce a disabled or ill person's life to a 'life of misery', and therefore a life that shouldn't be if at all possible. I would want to know how many disabled people those who hold such opinions actually know. It is possible to live a full life with disabilities - just more challenging.

  • rate this
    +5

    Comment number 221.

    I have a genetic disease, which I have passed it on to my son. Mine affects heart function, and will shorten my life. But, so far, I've had 40 good years. I might not be running marathons, but there is still so much to see and do. Who is anyone to say my, or my son's, life is 'less valuable' because of a bad gene, or to decide that such a life should never have been? That's a dangerous road.

  • rate this
    +35

    Comment number 219.

    I am 32 and still suffering from my father's hereditary disability and I can tell you that I hate him for that. He knew he will pass it on to any child of his and yet that wasn't bad enough. I regret his selfish attitude and I haven't spoken to or seen him in many years because of this. You are right to ask you some questions: make sure you find the right answers not just the ones that suits you.

  • rate this
    -21

    Comment number 217.

    The assumption that the less-abled live exclusively painful, distressing lives is troubling. Yes, it is hard and difficult. Are many of you really suggesting they are better of dead, or not existing at all? Perhaps you should ask a few disabled people. Yes, they suffer but few want to die, and those that do, require more care and love, not to hear that science should eradicate their very existence

  • rate this
    +6

    Comment number 212.

    I agree with all the comments here that point out how positive an influence and an inspiration that Jono has been to many. Who are we to judge or decide if a disabled embryo should be allowed to live? I'm not suggesting its easy to live with disability - but the challenge is one which many rise to, and in so doing become inspirational to us all. I wish them all the very best whatever they decide.

 

Comments 5 of 17

 

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