| Location | Littlehampton |
| Age | 0 |
| Date of Birth | 12/2007 |
| Date of Death | 12/2007 |
| Visitors | 1,595 since 03/04/2008 |
| Creator |
Skyla's Story...
At 20 weeks gestation me and Tom (Skyla's dad) went for our scan excited about finding out the
sex of our first baby, only to find that Skyla had a mild case of ventriculomegaly (spelt wrong I
expect), this scared us so much but there was worse to come. We were referred from worthing hospital
to Kings College in London (a place we were to visit weekly from then) on the second scan there the
ventriculomegaly had become less of a problem but a new much worse problem was found. Skyla had a
congenital diaphramatic hernia which is when the diaphram has a hole in it which allows the stomach,
lungs and liver into the chest. This was restricting the growth of her lungs. So the first thing we
had to find out was whether she had any abnormalites she didn't this was a relief and Jacque
Jani told us that if she had any abnormalities there would not any chance for her and they would not
be able to do anything about her lungs. This was difficult to hear but at least he was honest. We
could always rely on Jacque to be honest. He performed the mini op through me which involved putting
Skyla to sleep and inserting a balloon into her trachea so that the fluid her lungs produced could
not escape. This was to expand her lungs. Everything was improving and her chances were moving up
from 50%. We were so optimistic.
At 30 weeks gestation my midwife found too much protein in my urine and I went to Worthing hospital,
I had developed severe pre-eclampsia. Midwives and doctors tried to transfer me out saying they
didn't want me to deliver there because Skyla's balloon had not be removed and they
didn't have the facilities to deal with her cdhernia. But she was on the heart monitor her
heart rate decreased several times and this ment that I had to have an emergency c-section. We were
all scared our faith lied in Dr Jani. A consultant from Brighton was called over he was the one that
would puncture the balloon when she arrived. This was all a success and she was born on the 21/12/07
late evening and taken to the special care baby unit in Worthing whilst they tried to find somewhere
to transfer her to. They got hold of GOSH and a few hours later the team came and after bringing her
to see me she was taken to GOSH. Tom followed up on the first train in the morning, we needed
someone with her.
She was doing really well, opening her eyes for her daddy whilst he read the football scores to her
(determined that she would follow Chelsea lol) and the Tv paper to pass the time. He barely left her
side. Her operation was on Christmas eve to close the hole in her diaphram, during it she went into
cardiac arrest but she fought, me and Tom believe she wasn't ready to go yet she was waiting
for her mummy to get there, so the 3 of us could be together.
After the operation her condition was never stable, if the oxygen she needed went down, the drugs
she needed went up, the balance could not be found. But we still didn't even have in our minds
that she wouldn't make it after all she had been through. She then needed more drugs and
another line into her body. When this was done as her body was so small they punctured her lung. She
fought for 30 mins but she just couldnt hold on anymore, she died on the 28/12/07 She had fought
enough. Me and Tom spent hours saying goodbye and washing and bathing her. But then I knew it was
time to leave we had to go then we had to let her be in peace.
Christmas will never be the same for us or our family any more, it's now Skyla's time of
year we will think of her then more than we do everyday. From the words from her daddy's speech
"Good night, god bless" we will always love you angel xx
Please light a candle for Skyla and also if you can, donate to GOSHCC as we have them to thank for
her week of life and want to help them save more lives.
Thank you for taking the time to read Skyla's story
Be Happy for my Sake
Many days have passed now
Since I left your world behind
From so far away I watch you
As you hold me dear inside.
I know how much you miss me
Because I miss you in return
Although you know I’m happy
In your eyes the tears still burn.
I try to give you comfort
From heaven when I pray
The only wish I have
Is that I could take your pain away.
Please know how much I love you
That I am always by your side
You see, I have a purpose here
So open your heart wide.
I want to watch the good things
That will happen in your life
I can’t stand to see you sit there
And repeatedly ask why….
There is nothing that you did wrong
And there is nothing you didn’t say
I know your thoughts and worries
As I walk with you each day.
If you listen really closely
You can hear the words I say to you
You see, I still share my secrets
I tell you everything I do.
I stay strong because I love you
And because I know the day will come
When we’re allowed to be together,
We’ll walk hand in hand into the sun….
for your mummy skyla. xxx
We are connected, My child and I,
by an invisible cord, not seen by the eye.
It's not like the cord that connects
us 'til birth
This cord can't be seen by any on Earth.
This cord does its work right from the start.
It binds us together, attatched to my heart.
I know that it's there, though no one can see,
The invisible cord from my child to me.
The strength of this cord is hard to describe.
It can't be destroyed, it can't be denied.
It's stronger than any cord man could create,
It withstands the test, can hold any weight.
And though you are gone,
Though you are not here with me,
The cord is still there, but no one can see.
It pulls at my heart, I am bruised...I am sore,
But this cord is my lifeline, as never before.
I am thankful that God connects us this way,
A mother and child--Death can't take it away!
Memories x x x
If we could have a lifetime wish
A dream that would come true,
We'd pray to God with all our hearts
For yesterday and You.
A thousand words can't bring you back
We know because we've tried...
Neither will a thousand tears
We know because we've cried...
You left behind our broken hearts
And happy memories too...
But we never wanted memories
We only wanted You.
I dreamt that I visited Heaven
And found you there dressed all in white,
I wrapped you up in my arms so close
And held onto you so tight.
And when I woke up I felt better
Than I had done in such a long while
So thank you my Darling for hugging
And leaving me with this soft smile.
SENDING YOU MILLIONS OF HUGS
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ALL MY LOVE SKYLA LOVE CHER N JOHN XXXX
Your Goodnight Star
Last night at bedtime I looked out
To say goodnight to you,
And out the window through the clouds
A star came shining through
It sparkled and it twinkled
Like a precious diamond stone,
It looked as if it winked at me
And I felt less alone
On earth we can see starlight
Even if the star has gone,
And though you are not with me
Your light still does shine on
So though I cannot kiss your face
Or tuck you in all tight,
I’ll look to heaven, see a star
And whisper your goodnight.
Me too
I also lost my angel-baby Joshua to CDH although he was born sleeping 6 months into the pregnancy as there were also other complications. There are a few of us CDH Mummies here as well as on SANDS. Hope you can find comfort and support. Wishing you peace and gentle days ahead. Sending you lots of love and hugs. God bless xxxx
hello beautiful angel, hope you are having lots of fun up there with all those other gorgeous angels. i bet you have been playing in the snow today hope you wrapped up warm though. goodnight for now and sleep tight, sweet dreams sending my love always xxxxxxxx
so sorry to hear of your loss hope you are all ok and managing to find strenghth to get through the horrible times, sending my love always xxxxxx xxxxxxx xxxxxx
a message from you angel
I Walk With You Mummy
I walk with you my mummy dear,
I'm always with you, always near.
Just look behind as steps you take,
And see my footprints that I make.
They're in your heart when you're asleep,
You feel me kicking when you weep?
I walk with you when you are sad,
But I am happiest when you're glad.
I'm never far away from you,
I'm here in everything you do.
I walk with you if you're in pain,
I steady and help you up again.
And when on earth God calls you high,
I'll light the way mummy, to His sky.
God says I'm a gift mum, purer than gold,
He sent me to love you until you grow old.
You're blessed with an angel from Him above,
You gave me life, and we give you love.
I walk with you for eternity,
I am your angel, mummy look at me!
hello skyla
hope u don't think this is too wierd, but i am going round to all the special angels i know to say bye. i am going away for a week and won't be able to pop in and light candles daily. although i have only just found u and mummy, u r on my list on special angels. we have so much in common. im sure u must b up there will sammy. can u believe, you and sam, mummy and i, your daddy and sam's daddy were all at kings the same day u got your balloons. what a shame it didn't work for either of you. makes me so sad. im sure the proff and dr jaque are sad too.
i hope your mummy doesn't mind, but i have told some of the other cdh mummies i know about your mummy and you, and your lovely site.
sweet dreams angel skyla
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
jodie, i have made some great friends through gone too soon, and especially through sands. in fact quite a lot of the mummies i know are from both. it doesn't take away the pain, but it sure helps to talk to other angel mummies.
i'll pm u when i get back.
take care
caroline xx
i know your pain
Dear jodie, i couldn't believe when i read your main page, my beautiful little harry was born on 14th dec 07 at norfolk and norwich hospital with cdh he was then transfered to GOSH but died at twelve days old on the 26th dec 07 boxingday.Christmas for us will never be the same either!The cardic care care team at GOSH are fantastic and with out them we wouldn't of had twelve special days with harry. i know no amount of words can take the pain away but hopefully you will be able to seek comfort in that your not alone as i have.All my love harrys mummy, also on gonetosoon.xxxxxxxxxxxxxxxxxx
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