Chaedon Levi Adamson
02 September 2005 - 18 September 2005

In December 2004 I fell pregnant.
The Father and I broke up and I moved back to my mums’ house up north.
The Beginning of the pregnancy went really well, I had barely any morning
sickness and surprisingly wasn’t gaining any weight.
At 20 weeks I went for my first scan, I was so excited to find out that my
Baby was a little boy, unfortunately The scan results showed Low amniotic
fluid. I was referred to a specialist at the National Women’s hospital in
Auckland.
The specialist told me that my sons’ survival was low, that because of the
Low fluid I would go into premature labour before 30 weeks.
I spent the next 10 weeks in bed and travelling the almost two hour drive to
the hospital every 2 weeks for a growth check.
My son had club foot in both feet, and an amniotic level of around 2.4 cms.
As I got closer to 30 weeks the anticipation grew, I was terrified of going
into early labour.
At 29 weeks I went in for a routine growth scan, an abnormal heart beat was
detected and my son had very little growth for the previous 2 weeks. I was
giving an amniocentesis which is a long thin needle inserted through my
stomach, threw the placenta to collect a small amount of Amniotic fluid,
taken to do some more testing, and to test for syndromes. I was then put
into hospital.
The tests like all the previous tests that they had done came back negative.
No one had any idea what was going on with my baby.
I had still not gone into early labour but now the worry was that if he
stayed inside too long he may get an infection.
I was induced at 36 weeks. 3 days later, after another 5 inductions I went
into labour.
I gave birth to Chaedon Levi on Friday the 2nd of September, 1.17 pm. He was
a tiny 4 pound 10, bigger than what any of us were expecting. Chaedon let
out a little cry, then no sound... it was obvious there was something very
wrong with him. He was rushed into Level 2 SCBU but soon after was put into
the most severe level 3 NICU.
Chaedon was put onto a ventilator to keep him alive, and in an incubator to
regulate his temperate.
I was still drugged up from the epidural but as soon as I was able I was
taken to see him.
He lay there very limp, with big tubes up his nose and in his mouth, a drip
in his hand, and lines going into his belly button, it was very over
whelming to see my tiny boy with so many machines hooked to him keeping him
alive.
I had never prayed so much in my whole life as I did that night.
The doctors still had no positive result to what was wrong with Chae.
He had cysts in his kidneys and Brain, Small lungs and an enlarged Liver.
They sent some tests to Australia to check for a very rare syndrome, so rare
that New Zealand doesn’t test for it.
My son had slowly began to breathe on his own and at 4 days old he was taken
off the Ventilator and put onto CPAP, another breathing machine that instead
of breathing for him, helps to keep the airway to his lungs open.
He was fed threw a tube, as he had no suck or swallow reflex, another sign
of the Syndrome they sent tests away for.
As the second week rolled round Chaedon began to cry and cry, I knew he
wasn’t happy.
We tried several times to get Chaedon off CPAP and breathing by himself, he
gave up breathing and had to be bagged and put back onto CPAP.
At 2 weeks old, we finally got the Tests back from Australia, The doctors
asked to have a meeting; I knew my son was going to die.
The doctors told me Chaedon had Zellweger Syndrome, a rare genetic disorder
that results in a typical life expectancy of less than 6 months.
Chaedon had the most severe level of the Syndrome, which along with the
cysts also led to blindness and deafness, daily, even hourly seizures, a
high risk of infections which Chaedon already developed and severe
retardation.
We were given the option of leaving him on his medications and to ‘see what
happens’ or to turn his machines off.
With the short life expectancy and Chaedons condition the answer was clear
to me.
We turned everything off and were given a nice room in the NICU ward.
I held a blessing at the Hospital chapel, which my close family and friends
attended.
He had a prayer written for him which was read out, and everyone got their
first and for most of them their last cuddle.
He was given Morphine every 3 hours to help with any discomfort he may have
been in.
I got to bathe him and hold him and for the first time since giving birth, I
felt like a mum. All we could do now was wait… wait for my baby boy to pass
away.
On Sunday Morning, 18th of September 2005, at 16 days old, I woke up
suddenly and took Chaedon in my arms, he let out his last small breathe as I
sat with him crying. I prayed and said thank you for blessing me with my
Angel, and because Life wasn’t for him, thank you for his last little
breathe.
The nurse came in and told me his heart was still beating, which was ironic
when his heart was the one thing playing up as I was pregnant.
20 minutes later she came in, checked him, and announced his time of death.
It was over.
We took photos, hand prints and foot prints in ink and gold paint, packed up
our things, and finally brought my boy home.
My Close friends and family were already at my house waiting when we pulled
in the drive, I got out of the car with him in my arms and burst into tears.
The funeral was held the following Wednesday, he lay in his tiny white
coffin, dressed in a white peter rabbit gown and blue shawl, and of course
his little blue beanie that I always had him wearing.
I choose Daffodils as the flowers and James Blunts ‘Beautiful’ was the
opening song.
I leaned in and gave him our last kiss. Then the coffin was closed. All I
wanted to do was take him out and hold him. It was the hardest moment of my
life.
To most of us, 16 days is barely over 2 weeks. But to My button it was a
life time, and to me, a lifetime of memories.
I Loved, Learnt and Lost so much, in such a short amount of time.
It has now been 6 months since he passed away, not a day goes by that I
don’t wish he was here, that I don’t wonder what he would be doing, if he
was just a normal healthy baby boy.
James Blunts ‘Beautiful’ is still hard to listen to; I don’t think there
will ever be a time when it becomes easy to listen to... But only time will
tell.
I miss him so much everyday.
Rest in Peace my Button
Mummy misses you.