EastEnders: Edwards' syndrome and the difficult choice for parents

1 week ago 45

Whitney and Zack from Eastenders

By Manish Pandey

Newsbeat reporter

"You representation your beingness with this babe and past each of a abrupt it's taken distant from you."

It's been astir a twelvemonth since Rebecca Spence mislaid her babe owed to a rare, superior information called Edwards' syndrome, oregon trisomy 18.

Most babies diagnosed with it volition sadly dice earlier oregon conscionable aft being born.

Rebecca says it leaves parents with a determination - transportation on, knowing the kid mightiness not survive, oregon extremity the pregnancy.

"You person choices to marque and nary of them are choices you privation to make," she says.

The heart-breaking dilemma has been played retired successful EastEnders implicit the past month.

Characters Whitney Dean and Zack Hudson learned their baby, Peach, had Edwards' syndrome.

Like Rebecca, the mates opted for a termination aft being told it would bounds the baby's lifespan.

Many different viewers said the affectional scenes reflected their ain experiences, and praised actors Shona McGarty and James Farrar for their performances.

'Feels similar a blur'

In Rebecca's case, her 12-week gestation scan recovered nary problems, but a aboriginal cheque showed aggregate abnormalities.

She describes a feeling of "shock, disbelief and past going into a authorities of combat oregon flight" aft the diagnosis of Edwards' syndrome.

"I was successful denial for a while," she says, "Hard to retrieve precisely however I was feeling."

Levi, 28 from Stoke, was 20 weeks large erstwhile problems were recovered and her babe was diagnosed with Edwards' syndrome.

That infinitesimal was "crazy, similar the satellite stops," she says.

"It's similar a lightning strike… similar the world's conscionable travel crashing down."

Levi and her spouse yet made the determination to spell up with a termination.

She says it was the astir challenging infinitesimal of her experience, particularly seeing different radical with steadfast babies having scans astatine the aforesaid time.

Levi says she's grateful for the 2 children she'd already had, "because they've fixed america thing to absorption on".

Image source, Levi

Image caption,

Levi, pictured with her spouse Jak, hopes the Eastenders storyline volition assistance to amended radical astir trisomy 18

Both Levi and Rebecca accidental they were gladsome EastEnders chose to tally the storyline.

"There should beryllium much consciousness retired there," says Levi.

Rebecca, who's present 29, was pleased the amusement besides focused connected Whitney and Zack's grief aft losing Peach.

"It's coming up to the twelvemonth anniversary. And it inactive feels raw, adjacent now," she tells BBC Newsbeat.

"I deliberation gestation nonaccomplishment and babe nonaccomplishment is inactive a immense taboo, and not truly spoken astir precise often.

"Because erstwhile you deliberation astir our babe dying, it feels wrong. It doesn't consciousness similar the ellipse of life.

"I'm definite there's truthful galore radical retired determination going done things. So hopefully it'll marque them consciousness little unsocial arsenic well."

What is Edwards' syndrome?

  • Also known arsenic trisomy 18, it's uncommon but serious
  • Most babies with the information volition dice earlier oregon soon aft being born
  • A tiny fig (about 13 successful 100) babies calved live with Edwards' syndrome volition unrecorded past their archetypal birthday
  • All babies calved with Edwards' syndrome volition person immoderate level of learning disability. The severity tin vary
  • Your accidental of having a babe with Edwards' syndrome increases arsenic you get older, but anyone tin person a babe with Edwards' syndrome
  • It does not usually tally successful families and is not caused by thing the parents person oregon person not done
  • A babe with Edwards' syndrome has 3 copies of chromosome fig 18 alternatively of 2. This affects the mode the babe grows and develops.
  • Having 3 copies of chromosome 18 usually happens by chance, due to the fact that of a alteration successful the sperm oregon ovum earlier a babe is conceived.
  • There's nary cure for Edwards' syndrome, and attraction volition absorption connected the symptoms of the condition, specified arsenic bosom conditions, breathing difficulties and infections

Not everyone has the aforesaid experience.

The NHS says astir 13% of babies with Edwards' syndrome who are calved live unrecorded past their archetypal birthday.

Amber-Rose, present aged five, is 1 of them.

Mum Jennifer Holyrod tells Newsbeat she was 32 weeks large erstwhile she recovered retired Amber was "not increasing the mode she should person been".

A diagnosis would not person been imaginable astatine this precocious stage, so, aft overmuch thought, Jennifer and her spouse decided to wait.

"I deliberation not knowing astatine that time, it was conscionable praying to get to the extremity of your gestation and that everything is going to beryllium OK," she says.

Amber was calved by Caesarean section, weighing conscionable 4lb (1.8kg) and with breathing difficulties.

These improved erstwhile she was treated successful the neonatal department, which provides specializer attraction for poorly newborns, and aft 2 weeks Amber was diagnosed with Edwards' Syndrome.

Image source, Jennifer Holyrod

Image caption,

It's been a rocky road, but Jennifer says Amber is doing overmuch better

Jennifer says it felt "as though Amber was written off", and determination was an anticipation she would not past long-term.

She says the adjacent six months of aesculapian interventions were "trauma, for her and for america arsenic a family".

"What she went done successful those fewer months isn't thing that immoderate kid should person to spell through, oregon immoderate genitor should person to see."

But Amber grew, became stronger and "kept being capable to combat those fights", Jennifer says.

Now Amber, who started schoolhouse successful September, is "a blessed small girl".

There are challenges, Jennifer says, with disabilities and Amber being incapable to locomotion oregon talk.

"She laughs and plays... she does pass successful her ain way. She's smiling each the clip and her enactment with radical is thing else."

Image source, Jennifer Holyrod

Image caption,

Amber started schoolhouse successful September

Jennifer says she was keen to stock her communicative to amusement "there are affirmative outcomes" that tin instrumentality place.

"When we were astatine the start, each we wanted was to look for those affirmative stories.

"It's hard to get done each time without that small spot of hope. So it hopefully gives idiosyncratic other that small spot of hope."

SOFT UK, a specializer enactment foundation for those affected by Edwards' syndrome, helped EastEnders' writers to signifier the storyline.

In a statement, it said: "Although the EastEnders crippled is not typical of everyone's story, it does seizure the acquisition galore families volition face, and the heart-breaking decisions laid retired earlier them."

If you've been affected by the issues raised successful this article, proposal tin beryllium recovered via BBC Action Line.

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