Jorja Louise Hughes

Jorja Louise Hughes
21st July 2006 - 13.08
22nd July 2006 - 09.15

I had a nightmare of a pregnancy with Jorja right from my 20wk scan. The radiographer noticed a
thickening of the nuchal fold, and suspected Downs Syndrome. I was offered a amnio there and then
which i chose to have. I needed to know.
Thankfully the results came back clear, but a further scan the following week revealed a problem
with Jorja's kidney, it was in the wrong place and the wrong shape, Jorja's bladder was also not
developing properly.
I was transferred to Birmingham Women's hospital to have detailed scans. There it was detected that
Jorja had a problem with her heart also. It seemed that the more scans i had the more problems were
found.
The consultant Dr McHugo was fantastic, she offered me more tests to see if our daughter had
chromosone problems, these tests also came back clear. Basically nobody knew what was wrong with our
daughter.
More scans revealed more bad news, our daughter had too much ammniotic fluid, and was way to big for
her gestation. Diabetes was suspected, further tests also came back clear.
Then at 32 weeks we were told that our baby wouldnt survive at birth, our lives were shattered. 2
weeks later after another scan we finally had some good news. We were finally told that our
daughter's condition was no longer deemed life threatening, she would survive, the hole in her heart
was not as bad as first thought, neither were the kidney and bladder problems, our daughter would
need antibotics for 2yrs, then surgery.
For the first time in weeks we left the hospital feeling positive.

On the 19th July 2006 after what was to be my final hospital appointment i was admitted to hospital
before my elective section on the 21st July. This was because the consultant was frightened that my
waters would break, and that the cord would prolapse. I was so excited, knowing that the next time i
left the hospital our daughter would be here.
I was taken down to theatre on the Friday morning, one day before my EDD. At 13.08 our beautiful
daughter was born into this world. She weighed 9lb 13oz, It seemed ages before she cried, we were
both so releaved when the crying came.
As you know all babies are born "blue" but Jorja was more blue than normal, and she wouldnt go pink.
We were told this was because she was "cold", i dont know if you can remember the weather that year
but it was beautiful, so hot. They put our daughter on a heated blanket, and left her there for
5HRS,while keep checking her tempreture. When she finally went pink (and soaked in sweat) they
moved us up to the ward. Within 5 mins our daughter was the colour of a ribena berry. She was rushed
down to Neonatal. At 9pm we were told that our daughter had a serious heart defect, she was being
transferred at 8am the next morning for major heart surgery. The heart consultant Dr Giovanni told
us that it was serious but it was nothing that he could not fix.
At 8am the next morning, we went to see our daughter, my husband was travelling with her. We were
not allowed to see her as she was having a drip changed and needed the room to be sterile. They
finally sent for us at 9.05am, and told us that Jorja had taken a turn for the worse. Little did we
expect to be told that our dauhter had gone. She had died while we were not there, we werent told
she was fighting for her life as the consultant said he " didnt think we'd want to see her that
way". I was so angry at him for denying us the right to be with our daughter when she left this
world.
At first we didnt want a pm done on Jorja, but we were told that we needed to have one done, to
determine whether Jorja's condition was genetic. After 4months we finally had the results and to be
honest no one knows why our daughter died. They seem to think it was "just one of those
things"...............

If you are still reading then thankyou for taking the time to share our beautiful little girl.

She is forever loved, remembered and missed.





These are few poems that i hold dear to my heart.

The first one was read out at Jorja's funeral and was written by Jorja's great Aunt

Forgive us if we question
What this life is all about
Sometimes we feel so angry
We may need to scream and shout
Sometimes we’ll need the guidance
To help us find the way
And sometimes there’ll be darkness
In the middle of the day
Has anyone got answers
Can anybody say
Why this little child so helpless
Just simply couldn’t stay.

Maybe she’s needed for a sunbeam
Or a bright new shinning star
Where in the Blackness of the night
She’ll twinkle from afar
Perhaps she’ll be the smallest angel
With a brand new pair of wings
Or just the tiniest baby bird
Who still the loudest sings
Or even just a seedling
That blooms the loveliest rose
That fills the air with fragrance
And the beauty as it grows.

Still questions left unanswered
Hearts breaking all around
With the saddest tears of loosing
That fall without a sound
There was precious little time
And life seems so unfair
They would have loved everyone to see
How beautiful you were.

And each new dawn the birds will sing
Each chorus starts anew
We shall look towards the heavens
And wonder if its you
Or when we smell the scent of flowers
Or see a star twinkling high
We shall tell ourselves that’s you our baby
Lighting up the sky

Whatever life holds for us
Whatever we may do
All the sweetest things on earth
Bring lovely thoughts of you
We haven’t got the memories
We’ve only had the tears
We couldn’t share the special times
That stay with you for years
But still your locked within our hearts
And we shall never let you go
Because we love you little Jorja
More than anyone could know…



This peom was written by Angel Ray's mommy....

Perfect little girl she sleeps like an angel in your arms,
She was too good for this world she is safe from all harms,
Jorja flys with the angels and as swift as a dove,
A perfect creation of mummy and daddys love.


My mom tell a lot of lie's

My mum,she tells a lot of lies

She never did before.

From now until the day she dies,

She'll tell a whole lot more.



She used to tell the truth a lot,

But now it doesn't matter,

I died and went to heaven,

Her life is all in tatters.



Ask my mum how she is,

She'll say "yes I'm fine"!

She wants to beg

"Please help me, I can't find that princess of mine!



Ask my mum how she is, she'll say "I'm alright"

If that's the truth then tell me,

Why does she cry each night?



Ask my mum how she is,

She seems to cope so well

She didn't have a choice,

You see, nor the strength to yell.



You think you know the feeling,

But this, it cannot be,

For even though you loved me,

You didn't love as much as she.



She will smile and tell you,

"It's ok, God, he has a plan".

But she will turn away and cry,

Cause she just can't understand.



Tell a joke and she will laugh,

But she is not ok

She wants to share the joke with me,

But it will not be today.



Some day you will feel better

"Yes I will" she lies.

She knows this will not happen,

Until the day she dies.



Ask my mum how she is,

She'll say, thank you, good "

She cannot tell you how she feels,

Oh I wish she could.



Ask my mum how she is

"Im fine, Im well, Im coping".

For God's sake mum,

Just tell the truth, just say your heart is broken.



Ask my mum how she is,

"I'm well, I'm good, and you"?

I'll shake my head in heaven

It simply isn't true.



She'll love me all her life,

I loved her all of mine.

But if you ask her how she is,

She'll lie and say she's fine.



Her carnival is over,

She's stepped off the carousel,

But to save you feeling badly,

She'll say, "thanks all is well".



My mum she's not gone mad yet

But oh so very nearly.

Dont ask my mum how she is,

Ask her how she is, really.



I am here in heaven,

I cannot hug from here.

If she lies to you don't listen.

Hug her, hold her near.



On the day we meet again,

We'll smile and I'll be bold

I'll say "Your lucky to get in here

With all the lies you told"