‘Our little Em’, ‘Munchkin’,
‘little gummi bear’- these were just
a few of Emily’s nicknames or alias
during her time with us. My favourite
was and will always be ‘gummi bear ‘prompted
by her beautiful nature and gorgeous
smile, not to mention the fact that
when an ad on TV would come on with
the ring tone called ‘gummi bear’ with
a little green bear dancing around the
TV she would get so excited, arms and
legs going everywhere while she was
laying on her playmat.
This is one of many memories
my husband Michael and I have of our
much loved and adored daughter Emily
which we love to share with anyone that
will listen.
We believe our daughter
was here for a reason, she had very
knowing eyes like she had been here
before somehow and a personality beyond
her very short 3 months, everyone that
met Emily always commented on how alert
she was for her age and I am sure someday
it will become clear to us the message
she was trying to deliver.
It has been 7 weeks since
our little heart angel died, some moments
feel like it was just yesterday the
pain is so gutting, so strong and I
write this through floods of tears just
remembering the emptiness and sadness
that comes back to me every morning
that I have woken up since the night
Emily died.
Emily’s story (and ours
too by the way) starts with feelings
of utter shock and amazement as Michael
and I had been trying to conceive for
about 3 years with no success. I had
been diagnosed with PCOS about 8 months
prior and we had just gotten back from
a fantastic holiday in the USA.
Before we went on holiday
I had discussed our options with our
GP and was to start on Clomid to help
ovulation on my return.
Since returning from
our holiday we had been quite busy,
I had been down south for a wedding
and to visit my sister and her two girls
and when I returned thought I had picked
up a tummy bug as I felt a little sick.
A few weeks later I still
felt average and couldn’t stand the
smell of curries or meat cooking and
couldn’t get enough of strawberry milk!
My sister in law suggested
I might be pregnant but I didn’t take
it too seriously at the time we had
been trying for so long it seemed near
impossible.
It got the better of
me and I did a test……pregnant!!
I was in complete shock…what
I had wanted for so long was now a reality…Michael
was thrilled.
We found out we were
pregnant on 16th Dec 2006
and decided to keep it as a surprise
until Christmas Day for everybody…..it
was such a special Christmas Day, we
called all our family and gave them
the best present anybody could wish
for….a new addition!
In the New Year we moved
into our new house, we both had relatively
new jobs as we had relocated from Maitland
NSW to Mackay QLD and we were busily
preparing for our new arrival due 21st
July 2007.
I had my 10 week scan
and blood tests with no problems; everything
was going swimmingly, until our 16 week
scan.
The sonographer took
a long time with this scan; he was trying
to get every angle so much so that my
tummy was getting sore. I kept watching
the man’s face waiting for him to reassure
me that this was normal procedure but
I had a sickening feeling that all was
not well.
He said that he couldn’t
get a good view of the baby’s heart
as the baby was very active and booked
me in for another scan the following
week.
We returned to the same
place a week later, the sonographer
after another lengthy scan left the
room and returned with another man…..I
knew then that this wasn’t good.
They told us that there
was an abnormality of the babies heart,
it looked like one side of the heart
was smaller than the other but they
would send us to Brisbane for more scans
to double check. I cried and cried and
cried. All I could think of was ‘this
isn’t supposed to happen it’s not right’.
We flew to Brisbane
and met with Dr Cameron Ward in Maternal
Foetal Medicine at the Mater Mothers
Hospital which was such a daunting experience.
The sonographer asked
if we wanted to know the sex …we nodded
and he showed us on the 4d scan that
our baby was a girl.
The first thing Michael
said was ‘There’s our Emily!’ he had
the name picked out for years and I
had agreed on it for a girl.
After what seemed like
ages and with a lot of people in the
room, all specialists of some kind Cameron
sat with us and delivered the news that
would change our lives forever.
Emily was diagnosed
with Hypoplastic Right Heart,
Double inlet left ventricle,
Transposition of the great arteries,
VSD and arch coarctation.
Cameron explained
that this was a severe abnormality
of the heart, pretty much as
bad as it gets and then went
through all our options with
us.
If she was to
survive through the pregnancy
and birth then she would undergo
a series of three surgeries
to help make the most of what
she has, all which come with
risks.
One option put
forth to us was termination,
we both quickly disagreed with
that notion as this was our
little girl….sick heart or not.
I asked if there
was something that I had done
before or during the pregnancy
to cause this, I was reassured
that because I was a non smoker,
not a heavy drinker, didn’t
do drugs and was reasonably
healthy that this was a mutation
of a gene in the early weeks
of pregnancy and nothing could
have prevented it.
We then sat with a midwife
who explained what would happen over
the next 4 months, arranged for my stay
at Ronald McDonald House from the 21st
June as I had to deliver Emily in Brisbane
and couldn’t fly past 36 weeks.
She explained that I
would deliver at Mater Mothers hospital
and Emily would be sent straight to
intensive care nursery to be looked
after and have a prostin drip put in
to stop her one valve closing after
birth.
How Emily was to be born
was up to me, they said either natural
or caesarean it wouldn’t make a difference
but I was scared of the impact of natural
birth on her heart as I had many friends
and family whose children had scary
births naturally with heart distress
and opted for a caesarean. As so much
of what happened during my pregnancy
was out of my control this was one thing
I could select and I felt more comfortable
knowing when Emily would arrive and
that the right doctors would be there
to help her.
During the months after
our visit to Brisbane I went through
stages of tremendous grief for my unborn
baby, apologising to her for what she
would have to go through, giving her
little pep talks about how strong she
needed to be when she arrives in the
world and to my delight she would usually
move and kick in response almost as
if to say ‘I know mum I will fight I
promise’ and fight she did.
Each check up was a non
event, I had a very normal pregnancy
and when I allowed myself to enjoy it
found it extremely rewarding to have
this little person growing in my tummy.
The day to fly to Brisbane
came quickly and I packed my bag and
off I went to check into Ronald McDonald
House.
Here I met some truly
inspirational people, fantastic volunteers
and staff among those I still keep in
contact with.
It was great to chat
with other mums to be, parents and families
who are going through their own crises
with such strength, it was certainly
uplifting.
Finally the day
came for Emily to enter the world and
after much nervousness and excitement
she was safely delivered at 5.43pm on
19th July 2007 weighing 3.574kg.
We saw her and held her
before they took me to my room that
night and I remember staring at her
photo that they took for me all night
with amazement.
During the following
week we had visitors and spent as much
time as possible with her, she was doing
well and had no problems feeding.
6 days after she was
born Emily was transferred to Prince
Charles for her surgery which was scheduled
for the next day.
Michael and I spent all
day with Emily, the staff there were
great they made us feel comfortable
and we went to Paediatric ICU for a
tour of the facility and they showed
us some photos of what to expect our
baby to look like after surgery.
Emily was number 2 on
the list for surgery the next day, there
were no guarantees she would have her
surgery the next day and they told us
we would know for sure in the morning.
Her surgeon Dr Jalali
came to see us that night to discuss
step by step what would happen during
the surgery and I tried to concentrate
on what he was saying but all I could
feel was panic that my little girl was
having to go through this.
He assured us he would
do his best to help her and rubbed her
head before he left, I remember thinking
‘ I feel so helpless but I know we are
in the best place and in the best hands’
this was some comfort.
I can honestly say that
night was one of the worst nights of
my life.
The next morning
I was getting some breakfast when one
of the nurses looking after Emily saw
me and said ‘We are getting Emily ready
for surgery now she has to be at the
theatre by 8am’.
I looked at my watch
it was 7.15am!!
Unfortunately, Michael
had gone back to RMH near the Mater
and after trying everything in his power
to get back to the hospital he didn’t
make it in time.
I walked Emily
down to the doors, gratefully accompanied
by Kristen a nurse whom I got to know
during Emily’s stay, I remember taking
Emily’s dummy out of her mouth, giving
her a kiss on the cheek and telling
her to be a good girl for the doctors
and nurses….it was so hard to comprehend
that this perfect little baby was so
sick that she had to go through the
imaginable.
I felt bad for Michael
because he missed seeing our little
girl before her surgery, I comforted
him telling him that he will see her
after I was sure of it…..but I was just
terrified of the possibility that our
baby wouldn’t make it through.
As the surgery would
take a very long time, probably most
of the day, Pat the social worker advised
us to get out of the hospital so we
ended up at Chermside Westfield wandering
aimlessly, fielding calls and messages
from worried friends and family.
We went back to the hospital
in the afternoon and waited in the ICU
waiting room..it was crowded and I felt
very vulnerable so I shuttled back and
forth from the ward.
We finally got to see
Emily that night around 8pm, even though
I had seen all the photos of what to
expect it’s still a shock to see your
own daughter like that swollen and all
the tubes and lines.
She had an open sternum
because she was only a week old it would
allow swelling to go down then they
close it a day or two later.
Dr Jalali explained that
the surgery went well, other than a
complication with the size of the shunt
to put in (he had to put one shunt in
then take it out and put another in
as it wasn’t working well enough)
She recovered well and
other than a rather red wound was able
to be transferred to High Dependency.Once
in High Dependency her wound started
oozing and weeping, Emily had an infection
and was put on two lots of strong IV
antibiotics to combat it.
Her cardiologist also
suspected she had an unstable sternum
which would require more surgery to
fix but they gave it a few days and
it settled itself, much to his amazement.
Emily got stronger and
stronger, a few weeks down the track
and her daily checks were uneventful
but her wound was still taking a while
to heal.
We got to have our own
room; I enjoyed doing more for her and
feeling a little more in control I became
part of the furniture as we waited for
Emily’s wound to heal.
I remember walking the
halls of the ward with Emily at night
when she was restless and looking at
all the inspirational stories of all
the kids that had passed through the
doors and saying to Em, ‘ you are one
of those miracle babies we will look
back at this together when you’re older
and reminisce’.
Finally the day came
when Em was given the all clear to go
home….I jumped for joy!
Michael’s mum had stayed
for support all the way through, we
were very grateful of this, she had
gotten to know Emily too and I was aware
of the mixed emotions of the day as
most of our family lived in NSW and
this meant saying goodbye.
After all the commotion
of getting home... Taxis, flights etc
we settled into family life,
Emily’s wound was starting
to dry up and look a little better and
I concentrated on trying to have as
close to normal days as I could in between
hospital appointments, checkups and
weekly clinic visits.
Everything was going
quite well, Em was looking healthy and
unless I told people of her condition
they would never have known.
We gave her Lasix and
aspirin once a day and logged all her
feeds and wet/dirty nappies just like
at the hospital, I found this gave me
an idea of how she was going and the
constant stress was that she wasn’t
taking enough feed.
We made another trip
down to Brisbane in September for a
check-up with Dr Ward, I brought up
her volume of feeds was a concern, he
agreed but she was gaining weight well
and otherwise was fine so wasn’t too
concerned.
Em was put on
Lisinopril to take the pressure
off her heart pumping, after
that all went on as normal,
we went for walks around the
neighbourhood, visited my brother
and his wife and had lunch dates
with friends and went shopping
as normal.
I started to
feel so comfortable with everything
that I even signed up for an
Asian cooking class one night
a week…it was a great way to
have a break and learn something
new too.
The week of my
first class Em started to get
more unsettled, I thought that
it was her ongoing problem with
wind but after a couple of visits
to the hospital along with her
wound weeping I was more and
more concerned.
That Friday after
not feeding at all the night
before I changed her nappy and
noticed a pale red stain..I
knew something was wrong and
took her straight to hospital.
Here we continued
to try to get her to feed with
no success and when she was
awake she was agitated.
Emily was put on a drip
to keep her hydrated and we were told
that they had no idea what was happening,
it could be some sort of virus but couldn’t
be certain.
The doctors called The
Royal Flying Doctor Service and were
told to get ready for a trip to Brisbane
sometime that night.
I slept by her side that
night which seemed to drag on forever…around
3am Saturday morning the RFDS arrived
to transport Emily to The Royal Childrens
Hospital.
We arrived at The Royal
after a hitch at the airport…we were
stranded at the airport for about an
hour waiting for the ambulance to arrive
with the right stretcher to get Emily’s
humidicrib off the plane!
I remember standing
on the tarmac swatting mosquitos feeling
helpless waiting, making small talk
with the doctors and nurse …my nerves
were shot and lack of sleep in the last
24 hours was catching up with me.
The stretcher turned
up and we were loaded in for the ride
to the Royal.
Once Emily was settled,
Dr Ward came to do some scans and discovered
that her heart wasn’t pumping well,
it was hardly squeezing at all.
They hooked her up to
lines to give her drugs to make her
more comfortable and also put a breathing
tube in to take the strain off her heart.
We saw improvement over
the afternoon and night, Emily was then
transferred to Prince Charles for more
tests and a catheter which was hoped
might help the situation.
We still didn’t know
what had caused this to happen, but
it was a good sign that she was responding
well to treatment.
Another hitch occurred
(I think it was just to make sure I
was awake and alert) as they were taking
Emily out of the ambulance when we arrived
at TPCH the bottom of the stretcher
collapsed at one end and all the equipment
Em was attached to slid down and was
falling! I caught the heart and oxygen
monitor, luckily the doctors caught
everything else and Em was strapped
to the stretcher so she didn’t go far…phew!
The next day Emily
went in for her catheter with no problems,
they widened her aorta which was a little
narrow, it was all they could find that
could have been causing her problems.
On Monday she was
gradually weaned off her meds and things
were looking good.
Tuesday morning Emily
was transferred to the High Dependency
ward where she was irritable and cranky.
As the day wore on we
tried feeding her through the tube but
that also made her agitated, she kept
on gagging like something was irritating
her.
The doctors and nurses
couldn’t figure out what was wrong,
they thought that it was probably a
side effect of having the tube down
her throat.
We were thinking it was
just something we would have to get
her through and Michael and I were to
take it in turns to have our dinner.
I went first and ate
in the parents room chatting to another
mum, I felt uneasy and ate as quickly
as I could, as I was about to get up
to go back in to Em and Michael the
head doctor from ICU rushed past the
door and glanced at me…I knew something
was wrong and at that moment I regretted
ever leaving the room.
I went back in and could
see the terror on Michael’s face…Emily’s
breathing was laboured and she was very
pale. Everyone was rushing around us
as they were setting up to take her
back to ICU, I kept asking ‘Is it normal
for her to look like that?’ no one would
answer me.
There was no time to
wait for the wardsmen to take her, Jason
ran with her cot down the hallway with
us and the nurse trailing behind …I
remember thinking ‘this stuff doesn’t
happen in real life only in movies this
can’t be happening’ we were told to
go to the waiting room and someone would
be out to tell us what was happening.
It felt like ages but
they eventually came and took us into
a room where we sat and they told us
the news no one ever wants to hear.
‘Your daughter is very sick, so much
so that we are doing everything to revive
her but it is not looking good. If we
continue to revive her and happen to
get her back we have been going so long
now that she will most certainly have
extensive brain damage. We need you
both to come and see that we are doing
everything in our power and come spend
time with her.’
We got to the bed
and they were working on her, they handed
Emily to me and I held her and told
her how much we love her as she slipped
away.
Our lives changed
forever that night when our baby girl
left us.
It is now 3 months after
Emily died and her autopsy results were
inconclusive. We will never know exactly
why our Emily left us that night but
one thing is for certain…she changed
us forever and those 3 months we had
her will be cherished always.
