From there to here with our little man Zachary
- By Peta Colton

Zachary has Kabuki Syndrome.

At 10 weeks I discovered I was pregnant with twins. I remember spending the next hour laughing from shock.  The following weeks were the usual twin pregnancy morning sickness, cravings, and anticipation of an expectant mother.

At 19 weeks a routine ultrasound showed that twin 2 had a cleft lip and pleural effusion. Our doctor broke the news gently and then told us that the baby had a good chance of being Down's syndrome.  I was devastated.  We asked the doctor for an amniocentesis and he performed it the next day. We were then informed that we would have to wait up to a month for the results.

Time stood still, and an overwhelming feeling took over our lives.  After two weeks we began daily telephone calls to our doctor to see if the results were in, and at day 21 we were told that they were but our doctor was away, and she (receptionist) couldn’t give them to us.  My husband jumped into the car and headed for the surgery.  Once there the receptionist said that the notes were on the desk and she would look away; I guess the sight of a man with tears in his eyes was too much for her to ignore.  He read the results and came home. He was crying and smiling at the same time - I knew the news was good. I spent the next few weeks very uncomfortable but content knowing that my fears of having a child with Down's syndrome weren’t an issue any more.

My next appointment was with a different doctor because mine was away. He seemed a little concerned about the growth of my tummy, (I was 31 weeks at the time). I assumed my little bubs were content and growing well.  While we were leaving he asked me to go and have an ultra sound ASAP, and the next available appointment was for the next day.  This ultra sound took 2½ hours and eventually the lady performing the scan said “I am not supposed to say anything, but your baby is very sick”. The radiographer told me to wait while they rang the doctor, who told my husband over the phone to get me to the WCH, (Women's and Children's Hospital), as soon as possible.  So much inside you just shuts down. Like a feeling of numbness.  On arrival we were shown to a suite where the bustle of nurses was just a dull noise as my heart was breaking. Our doctor told us it looked very grave.  I had nothing to say to any one including my husband.  A spinal block was inserted and the Caesarean Section commenced. Twin 1, our little girl Hannah was born first and I couldn’t believe how small she was, then twin 2 next.  I so vividly remember laying there wishing to run after the babies that they had pulled from my body, but I couldn’t move. Instead I lay listening and anticipating the cries of new born babies, but they didn’t come. The next thing I remember was incredible pain as the spinal block failed and they knocked me out.  When I woke I remember them fussing about my blood pressure when all I wanted was to find my babies.  Hours later they offered to take me to NICU so I could see Hannah and Zachary; I looked at Hannah she was small but I wasn’t worried. Then I met Zachary…

My world changed that day forever.

I cant explain the pain I was feeling, but it was a combination of fear, loss, and grief - and still now 8 years on, I don’t let myself remember. But it is still there.

The day you enter NICU nothing can prepare you for the roller coaster journey that follows, as a series of steps that lead you to here, this day. I spent the first 10 days as a patient at the hospital, which allowed me to spend every minute with the twins. Hannah graduated from NICU, to SCBU 1, but decided on another short stay back in NICU a little later. The first priority for Zachary was to drain the fluid that filled his body and chest cavity. So many drains, so many tubes, so many probes, and machines that went beep.

Expressing milk gave me something else to think about every few hours.