
Alyssa's Story
I had a text book first pregnancy,
that is almost everything in the text book I had! Morning
sickness (and afternoon, evening and night!), heartburn,
"hormone" headaches, stretch marks,
"pregnancy" itch, etc. etc. etc. I found a great OB/GYN
who was very understanding and easy to talk to which helped me
get through a very physically uncomfortable pregnancy.
At 18 weeks I had a routine
ultrasound. It was such a happy occasion, everything was fine
with the baby and we were amazed that modern technology could
allow us these first glimpses of our baby.
Ten days overdue, knowing I was
carrying a big baby and still no sign of labour, I went to my
OB/GYN's for a check-up prepared to get down on my hands and
knees and beg to be induced. I walked into her office and before
I could open my mouth she said "Well, I've booked you in for
an induction tomorrow." I was so happy, finally this huge
baby would be out and I could hold it for the first time.
That night I went to hospital and
gel was placed on my cervix to try and get
something happening. I had very mild contractions all night
and didn't get much sleep. My waters were broken at 8:00am the
next morning and then things started happening. From about
10:00am I had really close and very painful contractions. By
6:30pm I was ready to push. I pushed and pushed but this baby was
not willing to come into the world. The head would crown and then
retreat, over and over. After 2 hours it was decided the baby
would need to be delivered by forceps. By this stage I didn't
care, as long as they got it out! I was moved out of the birthing
room down to the delivery room. My OB/GYN arrived. I also had the
resident doctor and midwife in attendance and Julian (my partner)
and my mum as support people.
At 8:51pm on May 21st 1992 after 13
long and painful hours of labour and a large episiotomy my baby
was finally born (without forceps after all!). I delivered while
on a birthing stool and as I slumped back against Julian in
relief a sob of joy escaped from him. My OB/GYN asked me to tell
everyone what the baby was a couple of times but I felt unable to
move or even look down. Finally she said in a demanding tone
"Danielle, look down. What is it?" I sat up, looked
down and saw my baby for the first time. "It's a girl"
I told everyone, my pain and tiredness completely forgotten. I
held her in my arms and said to mum "She looks like I did in
my baby photo's." and she agreed. I was told that they had
to take her over to the "trolley" and get her cleared
out as she seemed to be a bit clogged up. As my placenta was
being delivered I asked how come she hadn't cried or made any
noise yet and what was going on. I was given
"reassuring" smiles while aspiration of her airways was
carried out. That noise will live inside my head forever. I knew
something was wrong but I wasn't too concerned at this stage.
Julian told me later he knew something was seriously wrong from
the start. I got onto the bed to be stitched and was told that
they were taking her to the nursery and would call in the
pediatrician "just to be safe". They gave me Alyssa for
a quick cuddle before taking her away. I said hi and told her I
was her mummy. We were looking into each others eyes and all I
could see were her beautiful blue eyes, I didn't even notice she
was turning blue. The midwife turned around, let out a gasp, said
"This baby needs oxygen" and she was rushed off to the
nursery. Julian went with her and mum left to tell our other
family members what was going on. Julian's family were in the
waiting room and had been for a while and my dad and a brother
were at home, an hour's drive away.
The resident stitched me, covered me
with a thermal blanket and left to find out what was going on. I
was all alone in more ways than one. At about 10:00pm Julian
returned and told me that the Pediatrician had arrived and
ordered a chest x-ray. They had trouble contacting the on call
radiologist but he had arrived and the x-ray was being taken.
It must have been another half hour
before anyone else came in. It was the resident who had been
given the nasty job. She said to us "You have a very sick
little girl." She briefly explained what the x-ray had
revealed and said the pediatrician would be around once Alyssa
was stablised to give more details. She told us she would have to
be transferred to the Children's Hospital (Over two hour drive
away). Julian asked what her chances were. "Not good."
we were told. It was the first time we had ever heard of the
congenital defect, Diaphragmatic Hernia. All through this I kept
thinking that I should be crying, my baby was very sick and would
most likely die. But I didn't cry, I couldn't, even though I
tried. I was completely numb, inside and out. I could not
understand what CDH was or how our baby could possibly have
it. What on earth was going on?
A few moments later my mum came in
and wanted to know what was happening. We told her what we knew
and she practically ran out of the room. She looked very upset
and I think she didn't want to upset us.
My OB/GYN came to see us at some
stage and was so angry that it had not been picked up on
ultrasound. She said that she would call the radiologist first
thing and have them go back over the films. I remembered the
happy day of the ultrasound and wished that it hadn't been so
happy and that the CDH had been discovered. At least we would
have been able to deliver her close to the Children's Hospital.
It was 11:00pm before the
pediatrician came around. He explained what a diaphragmatic
hernia was and that she needed to be transferred. The only thing
to save her would be an operation to correct the abnormality. He
said he had been in contact with a pediatrician from the
Children's Hospital and was told to keep on with the treatment he
had implemented until the ambulance arrived.
I had a shower and was taken by
wheel chair around to the nursery. As we rounded the corner we
saw our families in the waiting room. It looked like they were
holding their breath waiting to see how we were reacting. I gave
them all a great big smile and could see their immediate relief.
I had already decided that Alyssa was alive and I would think
positively. If she died then I would deal with that situation as
it happened.
Alyssa was receiving hand
ventilation as the doctor felt it the most gentle form of
ventilation. She looked so alive, she was very alert and followed
us with her eyes. It was like she knew who we were. Her eyes were
the darkest blue eyes I had seen. All of our family were allowed
to visit with her and there was no restriction placed on us at
all in this regards. My dad, an aunty, a close cousin and my best
friend all came to the hospital. Most of the closest people to us
saw Alyssa alive and alert.
We were shown Alyssa's chest x-ray
and the hernia was pointed out as that "big black
mass". How could something so big be missed on the
ultrasound? It was thought that a lot of her gut was up in the
left part of her chest and her heart had been pushed across to
the right side. Her left lung had not grown very much at all and
her right lung was slightly small. We were told no matter what
the outcome she would have brain damage. They were unable to get
enough oxygen through to her brain because of the size of her
lungs. This did not worry us at, as long as she lived!
It was about 1:00am that the
transfer team arrived and all our family left. Julian was to stay
at the hospital with me overnight and we would travel to the
Children's the next morning. We had both been a long time without
sleep and everyone felt it would be unsafe for us to drive until
the morning.
The transferring doctor came and
spoke to us. He said it was a large hernia and her chances were
not good. He told us babies they expected to lived often died and
those expected to die sometimes lived. He said they just didn't
know. He said it was high possibility that she would not even
survive the trip and if she did it would put things in a
favourable light. They would call us the moment they arrived.
We went to say good-bye to Alyssa
and I said "Oh, she's fallen asleep." They explained
that they had paralyzed her in order to give her the best chance
of surviving the trip. I felt sick to the stomach when they said
that but trusted them just the same.
Before falling asleep that night,
holding the photo's of Alyssa we had taken, I had my first cry.
Neither of us slept much and we were
both awake at 5:00am that morning when the call came through from
the Children's. The nurse came into our room, smiled and said
"She made it." We were so relieved and happy. As soon
as I was examined and discharged and we went home to prepare for
our trip to the Royal Children's Hospital in Melbourne (Victoria,
Australia).
To our clothes in the suitcase I
added a knitted bonnet, some booties and a change of clothes in
which to bring Alyssa home from hospital in. The bonnet was to
keep her head warm in hospital. She was such a big baby that the
one used for her in the local hospital was too small (we were to
discover that Alyssa weighed 9lb 8oz and was 59cm's long - 50cm's
being average!). Julian called the hospital before we left and
was told that she had improved throughout the morning after a
very rough time during the ambulance trip. We said good-bye to
our parents and set off expecting to return soon with our baby
all mended.
We finally got to the hospital and
were shown to an interview room where we waited. A nurse and
doctor arrived to explain Alyssa's current situation. She had
deteriorated over the past couple of hours and we were warned
that she did not look like she had when we last saw her. A social
worker also came in and counseled us. Were not able to see Alyssa
straight away as they were "working" with her. When
they finally led us through to Intensive Care there were a number
of medical staff surrounding her. As they moved away I couldn't
believe my eyes. I burst into tears. There were tubes everywhere
and her skin colour was strange and patchy. For the first time
since she had been born I realised that she actually was so very
sick. I couldn't stand to be there, looking at her like that. We
left really quickly. It was breaking our hearts to see her. We
wanted to go for a walk and get some fresh air so we could gather
ourselves. We were told that it wasn't a good idea as she could
die anytime, in fact her heart had stopped a number of times
already that morning and they had struggled to keep her alive for
us to see her.
She was not responding at all and if
for some miracle she lived and became stable enough to operate on
she wouldn't have a very good quality of life . By this stage she
had severe brain damage, she would never walk or talk. They were
unable to get a reading on her blood pressure and we were asked
what we wanted the doctors to do.
We both said that we would never
want to be left to live that sort of existence. We agreed that
the best thing to do was to turn the life support off. They asked
if we would like to hold her after this was done. Julian said no
and I said "Well I do." He said he would come and sit
with me but that was all.
Well, I had not held her very long
when Julian said "Come on, my turn." He was so glad he
held her, he would have regretted it forever if he hadn't. I
don't know how long we spent with her, it was like time had come
to a complete stand still.
When we decided that we were ready
to leave we handed Alyssa back to the nurse. She cuddled her so
close, kissed her and was whispering to her. It was very touching
to see that she cared so much for our baby but it also hurt me a
great deal. This nurse had probably spent more time with Alyssa
than we had. I know our children are not possessions for us to
own but I felt for an instant like Alyssa belonged more to the
hospital than to us. Of course I carried her inside me safely for
9 long months and she is more alive to us now than anyone else
but I felt what can be described as nothing else except jealousy
when the nurse said good-bye to our baby. I felt guilty for
feeling that - just the start of the many guilty feelings to
come.
In the years that have since passed,
tears, far to numerous to count, have been shed over our
beautiful little girl, Alyssa.
Alyssa only lived for 20 hours and
20 minutes but touched us in a way nobody else ever could. She
changed us and our lives so completely and brought so much pain
into our lives, yet I would not give up my few precious memories
of her for anything.
"You are so beautiful to me,
You're everything I'd hoped for, You're everything I
need, You are so beautiful to me." (Word's from the
Joe Cocker song we played at Alyssa's funeral and the music you
are now listening to.)
That's Alyssa and how we, her mummy
and daddy, thought of her and always will. We just wish we could
still have her here with us in body. She will always live in are
hearts and souls and is remembered each and every day, for the
rest of our lives.
We love you Alyssa xxxx
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