Jono Lancaster Follow Up: So What If My Baby Is Born Like Me?
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.
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.”
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.
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).
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.
“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.
“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.”
So What If My Baby Is Born Like Me? will be broadcast on BBC Three at 2100 BST on Tuesday 19 April 2011
Same Difference 
Hi Jono and Laura,
I have just watched the programme this evening and would like to say that as a woman I agree with you Laura with regards to having your own baby, although I have not had a child despite being disabled myself. I also agree with you Jono with the moral aspect of the situation about having your baby naturally.
Personally you have to do what is right for you both and disregard what other people think because at the end of the day both of you will be bringing up the child and only both of you can make a decision that is right for you.
I remember whilst at school being told to write an essay about something that really concerns you – my essay was about bringing into the world a child with a disability. I said that every child has a right to a life and wouldn’t and still don’t agree with abortion or euthanasia.
Despite my disability and the operations I have had, I still was a happy child and did everything and more that a able bodied child did, from swimming to horse riding and camping to playing a musical instrument, reaching all to a high standard to. Yes I got bullied, teased and sometimes my life was hell by the comments of other people but this made me stronger and more determined than I probably would have been had I not been disabled.
The strain my disability caused my parents and my siblings was enourmous, many sacrafices had to be made but my parents would not have had it any other way. The doctor actually told my parents to put me in a home and forget about me and get to go away and get on with their life. This of course did not happen.
Whatever decision both of you make, it will be the right one for you both and Jono don’t feel guilty, the human race is a unique one in as much that not all situations suit everyone and we all have our own minds as to what we feel we should do.
Take care both of you and looking forward to hearing that you are parents soon.
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Can i just ask if your aggregated by the treatment ivf gdp is it because surly if you were to have a child you would like for them to be able to walk even if that meant you suffer a little more? not to be mean just out of curiosity
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hi jono and laura,
i also watched your tv program tonight and i just have to say i am amazed by you both,
jono, the courage you have shown is just out of this world you give other people with your condition confidence and a will to live and little maisy was so beautiful bless her, and if i were you i would have a baby the normal way, as no matter what he/she will be loved to bits.
ok you can’t stop bullies and thats a main issue with any child growing up but don’t give in to the arrogance and disrespect of other people to stop you having your own child,
good luck and i look forward to watching your outcome in the future i hope.
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Jono and Laura
I watched your program and I can’t believe that people say thoose things to you, your both really brave and i hope that you can follow your dream and get the child/ children you deserve.
Laura, you must be a very lovely person cause some people woulld take a look at Jono and think he’s and idiot and not worth the time, effort or love. But you have a husbund that loves you to bits and are very lucky.
Ignore the bullies and the idiots that don’t bother to use there brain and find out what Treacher Collins is!
Good Luck for the future x
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Jono. Mate if i were you i would ignore all those fools talkin about you and you partner in them forums. Take it from me. You two are nice people and i know you will make fantastic parents. Yes make your desitions but dont ever let them fools get you down mate. The are a minority. Im with the majority who wish you well and best wishes in what you both decide what to do. Good luck you two. Best wishes deno. Xx
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hi
i loved watching ur programm the other night i am just soo devistated at how mean some people can be both of you are amazing and i wish you both all the best in the future
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Hey,
I’d just like to say well done for ignoring people’s critisism.
People may say that your not the definition of “normal”,
even though you may not look like most people, you have an AMAZING personality.
Also you have a body to die for and the best hair i have ever seen.
Take care and good luck in the future.
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Hi Jono and Laura
I’ve just watched your programme and wanted to wish you the best of luck for the future.
You’re a great couple who will one day make fantastic parents. Don’t listen to anyone else’s opinion on how you should conceive – just talk to each other and make the decision that feels right for the both of you.
x
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Dear Jono
Your story has been a really inspiration to some of the problems that I experience and I think that you are a great role model. I admire your strength, courage and how you problem solve.
Lots of luck to you and Laura and I think your “Mum” is great. I hope I have not offended you in anyway by putting mum in inverted comments.
Everyday is a challenge and I know it must be very hard for you and Laura since I consider you as two since you are commited to her. I can see that.
Lots of Love
Annabelle
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I cannot believe the kind of horrible people there are in the world, just ignore them, everyone is beautiful in their own way. I am an 18 year old girl and I may not know much about this situation but here’s my opinion:
Firstly I understand why you would wnat to adopt as you were adopted and do not feel any less love, etc. however I do also understand Laura’s wanting to have a baby of her own which is usually just a natural female instinct as you know that baby if yours, you have held them for 9 onths therefore the bond may or may not be stronger depending on the persons feelings but I belive that Laura would feel the bond is stronger and if I were you I would definitley go with the IVF GDP
You are truely inspirational, both of you, and I wish you the best of luck with everything. Just keep your head up and keep living your life the way you wnat to! xxxx
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I would just like to say that I was horrified by the comment made about your looks. The person who said you were ugly is completely wrong!! I bet his face is the same shape as most, but that most definitely doesn’t make him a nice person. You are such a beautiful person on the inside and the outside, which he isn’t. He’s probably jealous because he can’t get a girlfriend at all, never mind a lovely lady like Laura.
I’m sure that the main reason Laura is with you is because you’re a lovely person.
Therefore, Mr Nasty is NEVER likely to have a Laura of his own. He certainly doesn’t deserve to!!
Wishing you both all the best and hoping you’ll be doing updates on BBC?
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Hi Jono,
i would just like to say that i find you absoloutely brave and adorable!
you girlfriend Laura is incredible and shes just the best,
Im just a 15 year old girl, and i find your syndrome really fascinating 🙂
I’ve watched both your documentry’s on BBC and there great!
Don’t mind all those nasty comments there just rude people with no sense of humanity 🙂
Just wish the both of you best of luck for the future 🙂
Jono your the best!
And Laura you beautiful
Best couple ever!
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Jono and Laura,just to wish you both the best of luck in wotever u decide!Jono,u r an inspiration and a fantatsic role model to other kids with this condition!Hope to see an update on how things turn out.Good luck and lots of love, Donna xxx
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I have only just now gotten to see this and I have yet to discover how it all worked out. I am impressed because I can see the weight of such decisions. I have a rare disorder that also ranges in severity and would I want to put a child through that? Or would I deliberately select against an individual like myself so they would never be born? Very, very tough decision. My heart goes out to you. I will say this, what decisions would you make without that technology available?? If you would take the risk, then I think you have your real answer. If you just went ahead without knowing and the child was severely affected, remember that you did not choose or cause that suffering. The disorder isn’t your fault. How rich and happy the child’s life is would be in your power. Either way.. make the same decision you would make otherwise… I no longer have the ability to have kids, my disorder robbed me of that last year. If you value who you are with the disorder, then value who that child will be, with or without that disorder.
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Ohh… I watched to the end. I think there is a bit of confusion that I’d like to clear up. Having that selection procedure done doesn’t remove the health risk from the child, it selects children who don’t have that health risk and throws away the ones who do. The point of conception has already occurred so each one is an embryo – and depending on one’s personal views, may or may not be considered to already be a child. This is no different in most ways to deciding at a 6wk scan to abort. It is the selection and rejection of embryos. The rejected ones aren’t going on to happyland, they are being disgarded, same as aborted. What a difficult choice. 😦
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I had the same question. If you understand the biology an embryo as soon as implantation happens. 8 cells or 1 billion all just a matter of time. What a difficult decision.
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I was extremely moved by the program and I have such admiration and love towards Jono & Laura. I wish you all the best – and wish that ALL couples were as caring and concerned about becoming parents as you are. I totally understand the desire to want to have your own genetic children – although I know many people – adults and children who have had wonderful experiences adopting children – and in being an adopted child.
However, there certainly is something wonderful about becoming pregnant and giving birth. I do understand Jono’s thoughts and concerns about aborting any embryo – but I believe with all my heart that the science that allows us to know if an embryo will develop into a healthy child is a miracle – and should be used to make wise decisions. This miracle of knowledge is not a matter of morality – but a matter of true love and kindness to the potential child. I wish you both all the luck in the world with your journey. You are a lovely couple – and will make marvelous parents!
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I just saw the BBC documentary. What a difficult decision to go through and I thank the couple for sharing their story. If Laura wants to carry a baby and Jono wants to adopt, why haven’t they considered sperm donation? It solves all but the baby being biologically Jono’s.
Not saying its the RIGHT decision but it seems to not even have been considered.
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I just wanted to wish your entire family a happy life, whatever you decide. This is not an easy decision, but I will say if it was me, I would adopt. I’m 40 and have never had kids, I get ridiculed and treated differently because of it too. I feel there is a huge over population problem in this world and feel that if I brought another child into this world, I would be more a part of the problem that the solution. There are so many people in this world already suffering, my biggest benefit to the world would be to help those in need first. But that is me and we are all different to some degree. Whatever you decide I stand behind you all the way. This is a matter of the heart, listen to your heart and the answer will be there. I meant, no harm in writing this message, if I offended anyone please forgive me.
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when you have a child you learn what love is and when that child is in pain you learn what pain is . then you learn to wish i am sure the parents of the children in youre show have all whished that there child did not have to be in pain just as parents of healthy children have wished that there child would not suffer the pain of teathing or of falling while learning to walk . it is a esay choice to make in my mind no pain thanks .and as for the people saying this is wrong to make a choice for a heathy child over a child who will suffer pain
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I would just like to say Jono, do not feel you are disrespecting others who have disabilities or who have children with disabilities because you are doing the correct thing as I am sure those parents especially would have loved the chance to find out beforehand and not have their children go through what they are as everyone hopes and prays for a healthy baby and no one in their right mind would willingly put their child through pain etc but unfortunately once the little ones are here they have to go through operations etc to give them a more positive life but I am sure they would rather have had prevention rather than cure so please don’t feel bad about it and I wish you and Laura all the best and hope that you do have a 100% healthy baby if you do decide to go for it, but with you two as your babys parents he or she or them! will be a beautiful little person or persons inside and out !
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Dear Jono – Only you and Laura knows what is the best route for you both concerning having a child. There is one thing for sure – and that is that you and Laura are exceptionally lovely people. I am sure that whether you had a child with your disability or a child without it – he or she would have a combination of both yours and Laura’s wonderful heart and spirit and be a joy to everyone encountered.
I come from a family of 10 brothers and sisters and 7 of my siblings were born with a genetic condition. I escaped it by a 50/50% chance of me inheriting it. Personally – I feel that I may as well as have been born with it – because their condition has had such a huge impact on my life – and still has.
When i got married – I went to see a genetic counsellor to find out whether I was carrying the gene ,as I didn’t want to risk bringing a child into the world with the condition. I wasn’t a carrier – but if I had have been – I would not have had my 2 sons, and my husband backed up my decision.
Stay focused on what is best for both you and Laura – because at the end of the day – you and her are going to be the ones with the responsibilty of raising the child – healthy or not – hence – other people’s opinions are not that important. What really matters is that you and her feel that you have made the right choice together.
Listen carefully to what Laura wants and how she feels Jono – because she is far more important to you and your prospective baby than any one else’s opinions.
The more you listen to people’s opinions – the more you will feel confused and unable to reach a decision that you are both happy with, and there is a risk that your final decision is based on a minority of public opinion rather than your own gut feelings.
Get away from the public eye for a few weeks and spend time together on your own and decide then. Visualise together yourselves as a family and how you would cope with different scenarios .Write a list of possible negative and positive outcomes and how you would both feel on each of all the points.
Remember – just focus on yourselves.
Love and blessings,
Annie.
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Jono and Laura,
I can’t believe that someone would set up a web page to say you are ugly and slag you off. They are the ugly ones deep down. And Laura is far better off with someone that is beautiful on the inside, that’s what really counts. Don’t read all those stupid negative comments, it’s a waste of your time! I wish you both the very best for the future and Jono don’t feel that you are disrespecting people with a disability by going ahead with the IVF. It’s not wrong for you to want to prevent your child from suffering. Just think of the good you have done by putting yourself out there and helping other people who are suffering. In doing that you have also set yourself up for the hurtful comments from those stupid people, but it’s good to see that hasn’t put you off and you are still going to schools trying to educate people and stop this discrimination.
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Dear Jono and Laura,
Watched your programme and felt inspired by it. We have a family member with Treacher Collins and she is a beautiful young woman who is very loved. Look into your heart – when the time comes, your heart will tell you what to do. Other people’s opinions are just that – other people’s opinions, and they will confuse you if you listen to them and dont listen to what your heart is telling you. You are both lovely people and the world is lucky to have you both in it.
love
margo xx
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I watched the programme and was completely moved. I think Jono is a wonderful man and Laura is very lucky to have him. Whilst I sympathise with Laura I would personally go the adoption route. I have two children of my own but I think if I were in your position I would want to give a child a chance by adopting one. Adoption is such a wonderful gift and I think you would both make lovely parents. Jono, you should consider starting a foundation in your name to help other TC children. Whatever you do I wish you every success. Children are the greatest gift ever and we must cherish all of them, perfect or not.
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Jono and Laura!!
Just have to say you are amazing , never give up a dream no matter what some people might think , just live your life like anybody else and be happy !!!
with love
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I watched your show tonight, from NZ, you guys are amazing, I admire you so much. Our child is IVF, we went through alot of agony about some of the same things, adoption etc, and you guys have even more decisions than us! I wish you all the luck in the world, I hope you have your baby, it’s the best thing ever no matter what, you’ll love them. good luck to you, in our thoughts
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Hi Jono and Laura, first of all i’d like to say that you are both two very amazing people and have proven to me and the rest of the world that true beauty is really only skin deep and true love comes from the heart where it should come from. I also watched your show last night from NZ and was moved. I know that you’ve got a really hard decision to make about having a baby and its not going to be easy, theres no one that can tell you what you should do and what is the right thing to do but yourseleves, so I dont know if this is going to help any, but I truely believe that Laura should make the final decision as she knows what she wants and she knows what shes in for, it dosnt matter how the baby turns out you will both make amazing parents and you will both give this baby all the love and protection that this baby deserves no matter what, good luck and all the best. Ross. Kia kaha.
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Hi Jono.
I watched the show here in Norway and what strikes me is not your looks but the stamina and “balls” you have to continue your training. It realy inspired me in my running and weight lifting every day ( iam 50) and btw your girlfriend Laura looks amazing and she seems like a well “rooted” girl as well, you lucky…… 🙂
Keep up the good work and all the best in the future for both of you and your mum as well.
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Hey guys,
My name is Nathalie and I watched your show in Canada, I have to agree with Kirsty who says you have a great body and the best hair ever! We all have to take the best we have and emphasize on it! Laura is also just the cutest ever! You guys are great no matter what and I wish you all the best from way across the pond in Canada!
Oh and I can’t wait to see that beutiful family the 2 of you will create 🙂
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I have just been privaledge to watch the documentary you both took part in. I found the entire film beautiful and inspirational – aside from the knowledge of people in forums wasting their lives disrespecting others! What I really wanted to say here is – if only half the potential parents on the earth spent one fifth of their time engaging with the enormity of ‘bringing a child’ into the world, perhaps the world would be a better place. You are both amazing, thank you for sharing your story. x
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Well when I watched last night I was shocked to hear you say that people had referred to you as ugly and queried why your partner is with you. Plain and simple, they must be the true definition of ugly to even think that way and why wouldn’t she be with you? You seemed compassionate, mindful, caring of her, patient and tolerant (re: the housework and cooking hehe), intelligent and articulate. I don’t see the problem myself.
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Hey guys,
I watched the show about a month ago, and I was hooked. I live in Autralia, and you are both an inspiration to me. You have awesome personalities, such faith, I love you both to death and I have only seen you on tv. I even used Jono in a school project! Yes, I’m young. 14 to be exact. Jono and Laura, ignore everyone who is putting you down. They are jealous of what you have; love, each other, a GREAT life (in my eyes) oh, and the fame! I hope you both get the family you have been dreaming of.
Love, Cloe 🙂
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I’m sorry but Laura’s way too selfcentered and snotty to be having a child in any shape or form.
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Jono-Laura–,Its bottom line time, Be honest and, simply do what is best for the child…I don’t advocate adoption,for many reasons–(like you two, you don’t know what your going to get),, but I have friends who have adopted,two babies,, and things seem to be going very well…But,,the kids have been spoiled rotten,,ha,,ha,,Davy, the adoptive father,,had a young brother,,who was retarded,,,so just like you,,there was a chance of a defective baby,,so,,they just chose to adopt,,and I honestly think,,it worked,,100%,, for them,,Without adoption,,they would not have had this beautiful family, they now have,,Also,,Daveys wife could not conceive,,,so that,,and the fear of mental retardation,,pushed the buttons for them,,,Jono,,did you ever stop to think,,that perhaps,,there is a child,,you were meant to adopt out there,,and that maybe God’,,in his infitite wisdom is pushing the adoption button,,so you will find this child,,,God works in mysterious ways,,his wonders to perform..I really think Jono,,that you are attractive, billiant,,and would make a ‘first class father’,,however it comes about,,,At first Davey and Becky,,never thought of adoption,,tried every thing,,but odds were just stacked against them,,,Guess what,,they still got two,,beautiful babies,,via,,adoption,,,Too bad, Jono,,that I’m 75 yrs old,,for,,you are toooo,,cute,,to be ignored…God Bless,,you both…Jono,,you’ve forgot more than most men will ever know,,of what the good things in life are,,,remember,,there are at least 2 babies,,wanting to get to know you,,,just do it,,,adopt one,,in a year,,get another,,,you won’t believe how happy Davey and Becky are,,with their new family,,,going great for them,,wish you could talk to them,,,so they can tell you,,these adoptive kids,,made their life ‘whole’
Grandma Joyce Decker,,,( THE FIRST THING,,ALWAYS,,IS TO PRAY OF COURSE,,THIS COMES FIRST)–BEFORE ANYTHING ELSE—LOVE, YOU BOTH,,,
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,,Jono, Laura,,,It would take a more infinite wisdom,,than any of us possess,,, to answer you this: (should I have a child),,we are not infinite,,so of course we donot have all the answerw,,
,,,,I would pray without ceasing,,,until the light shows through on your question,..God will give you an answer,
while you await an answer from God,(GET INVOLVED)-,there are many children’s organizations,,and hospitals,,that need all the help you could give,,St. Judes FOR ONE–Maybe you won’t have one child, but ,,you can ’embrace’ them all,,and they will all be yours to love’- Jono, Laura,,by the thousands,,p.s.–I once wanted a pup,,but was allergic,,so I just donated,,to North Shore Animal League,,,in my mind,,I was showing ‘love’ to thousands of pets..All I’m saying Jono, Laurie,,the “children” belong to all of us”,,,to love,,shelter,,and take care of..Think of some capacity that will enable you to work with children,,there is nothing more rewarding,,and you will have many,,many,,children to ‘support,,love,,and care for, (,,BY DOING THIS,,YOU WILL BECOME FULFILLED,,AND NOT MISS HAVING CHILDREN AS MUCH ),,,IF YOUR WILLING TO HELP CHILDREN,,THEN,,THEY ALL ARE YOURS,,TO EMBRACE…BEST WISHES–,,Grandma Joyce,,
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