Abby, 16, is mum to Riley, 7 months. She's determined to get qualifications and provide a good future for her disabled son. But will doctors be able to diagnose him?
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You're so clever! Double high five?
When I got pregnant I was 15, everything during my pregnancy was scary.
They told me at my 20 week scan that
it would be best to terminate him.
I knew that I had to carry on, we were going to have a baby,
it didn't matter at that time what was wrong with him.
I'm tired of not knowing and I just want definite answers now.
Oh, lovely! Love kissing my mum and squeezing her hair.
16-year-old Abby lives in Farnborough with her mum Lara
and nine-year-old sister Paige.
Riley, clap hands!
Abby's son Riley is seven-months-old.
Hey, how clever are you, darling?
When I got pregnant I was 15 and obviously I was shocked
cos I didn't expect to be pregnant,
it just happened.
My mum reacted shocked cos I'm her baby and she didn't expect that.
She was obviously 15,
and so young and had GCSEs to do yet and I just thought
how tough it was going to be really. It's tough having a baby at any age.
Abby had been with her boyfriend Jake for five months when she fell pregnant.
We've been together for a long time.
He was shocked as well but he never told me what to do,
he knew it was my decision so he just left me to it.
He is a very good dad, very supportive as well, as a boyfriend.
But Abby's pregnancy didn't go to plan.
Everything during my pregnancy was scary and exciting.
Up until 20 weeks I was just doing normal things but I didn't expect that would all change.
Yeah, we went for the 20 week scan, they seemed to be taking
a long time checking everything and I knew straightaway something was up.
They told me there was an 80% chance he would be severely disabled.
They told me there was a chance that he wouldn't breathe when he was born
because his brain wouldn't let him.
They told me he'd never walk, they told me he'd never talk.
And I just didn't know what to expect.
As doctors predicted,
Riley wasn't breathing when he was born and was rushed to intensive care.
I thought he was dead and it was awful,
he fact that she couldn't even hold him after she's been through was tough.
But he did really well actually. Almost straight away,
he wanted to get off the ventilator and breathe for himself which was great.
And it was really nice that Abby and Jake could have cuddles with him.
obviously it was hard because he had so many tubes
and he had splint on his arm, bless him.
He looked really poorly actually. And so tiny.
Tests found a cyst and enlarged cavities in his brain
which could be life threatening.
I just wanted him home.
I knew that he was breathing, and obviously I worried in case he
stopped breathing but I just had to be confident and fight like he was.
They transferred him within a couple of days back to our local hospital
and then he was home within a week, which was great really.
Since Riley's been home, Abby has been juggling motherhood
while studying for 13 GCSEs.
Come on then! Come on out!
I just feel stressed out.
Every mum wants their baby to have everything
and I can't give Riley everything if I don't get GCSEs.
It may be a lot of time without him
but it will give me and him the best future so that's what I've got to do.
Since having Riley, she hasn't missed one day of school.
She wants to deal with it, she's really independent.
I get emotional when I talk about how proud I am of her
cos her day begins at 3.30pm when others ends,
she gets in the door and has to start her day with Riley.
There we go.
Was you a good boy last night or a bad boy?
He was a cheeky boy, wasn't you?
It was one, and then half three,
and then got up at five.
'Abby hasn't had a good night's sleep in eight months.'
There's times when she doesn't want to go to school in the morning,
like anyone who doesn't want to get out of bed in the morning. I am pushy to her
and I say, "I'm sorry, you have to go to school," and sometimes it's a bit of tough love from me,
whereas maybe other parents may have said, "No, you stay in today,"
because she's doing so well at school and she's got her GCSEs
and she's predicted A-stars.
Are you tired?
OK, Mummy needs to get ready for school.
Yeah, Mummy do her hair.
I think sometimes is it a bit like two lives cos at school,
you're not being a mum when you're at school,
you're being any other 16-year-old doing their GCSEs.
When Abby isn't at school,
all her time is spent managing Riley's specific needs.
He can't suck properly so you have to squeeze his cheeks
when he's feeding his bottle, otherwise he won't be able to drink much.
But he's got club feet and he's obviously got his webbed hands that they need to sort out.
He can't smile because of his nerves in his cheeks
so he won't ever be able to smile like us.
Everyone wants to see their baby smile and when you don't see him smile it is upsetting.
But we know he's smiling.
We can tell in his eyes that he's smiling.
He just puts a smile on my face.
As for his disability, they still don't know what's wrong with him.
I think i just expected for them to have all the answers
and they didn't have all the answers
and they still don't have any answers and I am tired now.
I'm tired of not knowing and I do want to know what's wrong with him.
I need to know emotionally because all I do is worry.
What if his brain isn't working properly?
What if he has a fit because they said he might be prone to fits more.
What if something happens? I'm constantly worrying because they don't know what's wrong with him.
Today Abby is leaving school early to see a geneticist,
one of several specialists investigating what's wrong with Riley.
I just... I think you're expecting to have answers today, yeah,
but we might not have answers today.
I am really nervous, scared.
But hopefully they can tell me what's wrong.
17-year-old boyfriend Jake still lives at home.
He tries to go to all of Riley's appointments.
Doctors still don't know if Riley's condition is life threatening,
and like any mum, Abby wants to know he's safe.
They said he's doing really well.
Yeah, they're pleased with his progress.
They want to do another MRI scan.
A bit disappointed that they can't tell us for definite
cos that's what I wanted.
More tests, yeah.
Desperate to know more, Abby has decided to do her own research.
She has entered Riley's symptoms on the internet and found a match, with a rare disorder called Moebius.
She's posted a message on a Moebius website asking for help.
I put, "Hi my name is Abby and I'm 16.
"I have a seven-month-old son with suspected Moebius Syndrome.
"Only when I saw the symptoms of Moebius Syndrome
"did I realise that it is everything that Riley had and was shocked
"that this had not been picked up.
"When they said my son was going to severely disabled
"and not be able to breathe, they were wrong
"and they put me through six months of misery and worry
"about whether I would bring my baby home.
"I may be young but I am strong,
"I've been through a lot over the past year.
"I really want someone to talk to about this. Abby."
Moebius Syndrome is categorised by facial paralysis,
limb abnormalities, difficulty breathing and cross eyes.
Significantly, although there is no cure, it's not life threatening.
I've had a few replies already.
Someone is 30 and has Moebius Syndrome.
Just talking to people that have got it
or parents that children have got it, to see that it's not just me that's going through it
and there are so many people that are doing exactly the same thing.
Abby will have to wait and see what the doctors say before she knows for sure if Riley had Moebius.
In the meantime life goes on.
Abby is nearing the end of her final year at school
and has her prom to prepare for.
Right, let's get you into the cubicle and get you into it.
It's important for Abby to just carry on and do everything she did before she had Riley.
Being at school and GCSEs, there's not much time to go out at all,
so everything is kind of hyped up for the prom really
and looking forward to it, almost as big as your wedding day I think for her!
So she's very excited.
Lara has been saving for a year to pay off the £365 dress.
Beautiful! How does it feel?
-Oh! Do you want me to take some more photos?
She looks like a princess.
It's different obviously cos I am a mum
and going to prom, but I think it makes it more special for me.
It's just a day like where I'm going to be a teenager.
I just think it symbolises the beginning of the rest of my life,
and going to college and getting a job and doing what I want to do.
While Abby is at school Lara helps babysit.
Today she is meeting best friend Michelle for lunch.
Did Abby have a bad night with him last night?
Yeah, he was a tinker again. You got Mummy up a couple of times.
Do you think she panics at night a bit with him?
She does worry and every little sound he makes, she gets up and checks that he's OK.
Do you want to lay like that cos it doesn't look very comfy?
Don't do that.
I don't like you doing that.
No I don't like you doing that.
I don't like what he's doing Michelle, it's almost like a fit.
Riley! No, what's he doing Michelle?
Because Riley was born with a cyst on his brain,
the family were told he could suffer from seizures.
He keeps trying to roll his head back.
Do you think we should go to the doctors?
His pupils are really tiny.
He keeps rolling them into the back of his head
and doesn't normally do that. I don't know why he's doing that.
I think we should go and get him seen by somebody.
Lara decides to pick up Abby on the way to the doctors.
If this had happened to a child that doesn't have any condition,
or any problems or anything going on in their brain
then we would just think, "Oh," and not worry about it.
But because Riley has got everything else going on,
everything is highlighted.
RILEY COUGHS OK?
-You all right?
Yeah, we've had a bit of a scare today, it looked like he was maybe having a fit.
You don't have to... It's all right!
Look, look, look, look. Abs, Abs.
It's really hard for me to explain it, because I don't want it to sound a million times worse.
The doctor couldn't find anything wrong with Riley and he's been sent home.
You've been worrying everybody.
At first I worried, about him having fits,
but eight months on I'm thinking it's OK, he's not going to do that.
But now he might have had one, it's so frustrating.
I just feel like I'm going to be worrying now forever
because I don't know, whether he's going to have fits, and that's the one thing I didn't want him to do.
Later that night, Abby is still worried Riley's not his usual self
and she decides to take him to the hospital.
Abby has spent a sleepless night in hospital whilst Riley undergoes tests.
His eyes are rolling back. His eyes are going back. Riley.
He's doing it, look.
What the matter, baby?
Riley needs to stay in hospital but Abby has the first of many GCSEs exams.
-I need to go.
Family friend Michelle has arrived to take Abby to school.
-Say goodbye to Mummy.
-See you in a bit, OK?
Love you. Good luck.
I know he's fine, but it's still leaving him in hospital, isn't it?
She knows that he's in the best place and at the moment
there's nothing she can do to help, she still needs to carry on with her school work,
because it's her GCSEs and this is really important to her,
which you have to commend her for doing.
It's a bit annoying I got to go to school
but if I miss this it's just going to ruin everything so...
-Got all your school stuff?
Riley spent another 24 hours in hospital before being discharged with no conclusive results.
A week later he is back for a detailed scan called an MRI.
Abby's taken the afternoon off school to be there.
So they were pretty certain that it was a fit cos you don't necessarily have to shake,
so that's what the MRI is going to tell us,
if there's any abnormalities cos they think that's what's caused the fits.
And also fingers crossed we will be able to get a diagnosis for the Moebius Syndrome.
Riley will have to be put to sleep,
a procedure that carries its own risks.
I'm a bit nervous now.
Hopefully he won't wake up and he'll just go to sleep. OK?
All right, we'll just bring this close to his face.
We'll just take him from you.
OK? You just stay sitting just as you are. He's fast asleep now.
-They just took him.
-Did you not sit with him?
-Yeah, but then they just took him away.
It's 45 minutes before Riley wakes up from the anaesthetic.
We're going to get you some milk, sweetheart.
He'll be back to his normal self in a minute.
We should be allowed home soon.
It will take a few weeks for the scan results to come through.
While Abby waits for the results,
she has arranged to meet someone from the Moebius support group.
I'm just excited really and nervous.
I just hope that he says that,
like, it doesn't affect him too much.
Although Riley hasn't had an official diagnosis,
Abby wants to learn more about Moebius.
25-year-old Martin is one of the only 209 sufferers in the UK,
and his mum Pauline had to face the challenges of bringing him up.
But nobody knew a lot about it.
In them days we were told he would never walk, talk and he might not survive very long.
I didn't like it when I was in school,
I tried to explain to teachers about it and they were like, "No, it doesn't exist."
Cos, Riley, you never see like, a smile.
I think that's going to come in time,
because it's only when I look back and see the milestones he's made
cos I didn't feel they were milestones at the beginning
cos you're just going from one thing to another.
When you're around it all the time you don't see the difference.
Then when you look back at photographs and stuff, you think he does look different.
- And do you live at home still? - No I've got my own place, I've got two kids.
I think every mother wants their child to have a life the same as everyone else.
Did you go to, like, a normal primary and secondary school.
The only thing I done differently was the speech therapist and stuff like that.
Other than that I stayed in the normal school.
Take every day as it comes and not worry about things.
The more I think about it, the more you get down about it
and I've fond if I try and live a normal life, have normal friends
and everything like that, I'm fine.
Meeting Martin has given Abby hope for the future.
I just feel better in myself,
knowing that he's going to lead a normal life, hopefully.
Just like Martin has done.
Abby is in the middle of her GCSE exams
and with all the hospital visits, she's behind on revision.
Mummy doing her maths homework is she? Yeah!
I'm just panicking about my GCSEs now.
And about getting the grades that I need
revising, fitting it all in really.
No, we can't have the pot, I've got to feed you it with the spoon.
I feel sort of bad as well, like leaving him, like with Paige and mum
when I'm revising because it's not fair on them, but they understand.
But Abby's studies are cut short.
He don't want his pudding?
No he just wants cuddles, he's a tired boy.
What about doing it when he's gone to bed?
Shall I do my homework later?
It's good that he's gone to sleep straight away,
cos normally he can be up for up to an hour, up and down.
It just means I can just get on with the bottles now...
and my GCSEs!
Today is a crucial day for the family,
they are getting the results of the MRI scan
and hopefully a diagnosis for Riley.
I just want Dr Malik to like, tell us the results and see whether
he thinks he's got Moebius Syndrome and to discuss what's next.
But obviously if he says he thinks he has got it will be good because
we'll know what to do next.
How are things?
Well, we haven't been back in hospital.
No more seizures or scares.
-Well done, Riley.
-So, obviously that's good.
After months of tests and referrals to numerous specialists,
Dr Malik finally has an answer.
I think the scan, the report is that things are very good.
There is evidence within the scan to suggest he has Moebius Syndrome.
I think I'm right that I think he has got Moebius Syndrome.
Based on that the nucleus, the seventh nerve nucleus.
-Right, so it is...
-So it is, yes.
There's no more cyst.
In other words there is nothing... There's no surgery involved,
There's nothing to do with his brain.
It's a question of providing you with support with that syndrome in mind.
And that means looking at his speech and language,
and keeping an eye on him to see what is he doing.
This is the news they've been waiting for.
Moebius is not a terminal condition
and Riley should be able to lead a relatively normal life.
Happy tears. Happy for Abs, you know.
I deal with things in my stride but for Abby this is really important for her.
You know, I know she goes to bed every night worrying about
whether Riley is going to wake up and stuff like that,
which, you know, is heart-breaking when you can't actually do anything about it for your child.
So today, to be told that is great.
It means a lot to...
Like, for him to tell us that he's got Moebius Syndrome
cos it feels like the end.
Of what I've been hoping for God know how many months.
You know, it feels like everything is kind of going right for us for once, really.
It took a while.
Back at home and Abby's friends have come round to celebrate the long awaited diagnosis.
No matter what's wrong with him, he's still Riley.
We all knew he was going to have something wrong with him,
we didn't know what the definition of it would be but...
We'll always be there for ya... Don't...
Don't cry cos you'll make me start!
-You've got through the worst of it now.
-Yeah, you're prepared for everything that's going to happen.
It's like you have all gone through it as well as me.
-I told you he'd be all right.
-No, you always said it!
I'm well proud of Abby. To be a teenage mum anyway
is obviously like the hardest thing ever.
Abby stayed at school, she's had to deal with Moebius Syndrome as it is, and I think that's amazing.
-Right hand green.
-Hayley pushed me!
I've learned just to not worry so much
and actually not to look too far into the future,
and to take it as it comes along.
I think I've found out that I'm a stronger person than what I thought.
Riley's definitely changed Abby's life for the better,
and most kids probably could have used it as an excuse not to go to school,
and to give up but Abby's actually turned it around
and made it a positive thing,
and almost like she wants to show people that you can do all of this
and be a mum, and be mum with a child with disabilities as well.
In the future I see me and Jake together still, and Riley.
And I hope that we can have more babies one day
and get married and just be normal,
because I want everything around Riley to be normal,
because if he's going to be a bit different
I don't want everything else to be different for him.
I want him to have the life that any other baby would have.
Next time we meet 16-year-old Danielle...
I was really shocked. I was focussing on my wrestling.
Wrestling is most definitely what I want to do but I'm that addicted to it.
..and Molly and Ross.
-Feeling like a dad?
Subtitles by Red Bee Media Ltd
E-mail [email protected]
Abby, 16, is mum to Riley, seven months. She fell pregnant at the age of 15 but things didn't go according to plan. Abby, boyfriend Jake and her mum Lara were told there was an 80 per cent chance Abby's child would be severely disabled and would never walk or talk. As the doctors predicted, Riley wasn't breathing when he was born and he was rushed to intensive care. Tests found a cyst and enlarged cavities in his brain which could be life threatening. But a week later he was out of hospital.
Now juggling motherhood with studying for 13 GCSEs, Abby hasn't missed a day of school since having Riley. She's determined to get her qualifications and provide a good future for her son. Abby's also desperate to find out exactly what's wrong with Riley; he has clubbed feet, webbed hands and he can't smile or suck properly. He's undergoing numerous tests but Abby still doesn't know yet if his condition is life threatening. She's looked online and thinks she might have found out the condition Riley is suffering from, but will doctors be able to give her a final diagnosis?