When Hadleigh was born three months early we had no real idea what life was going to be like.

Everyone told us stories of their uncle’s next-door neighbour who grew to six foot six and could count and spell by their first birthday.  We expected a couple of months in the NICU, learning to breathe, feeding, growing.  We certainly didnt expect a world of pain, hospitals and a relentless battle to enable our boy to grow and keep him comfortable.

From day three, Hadleigh declared himself as a kid who wasn’t going to follow the rules.  His lung collapsed for a second time, and by the third time we quickly realised things might not be quite so smooth sailing.  Mary and Stephen from True Colours arrived and were a set of ears to listen to all the contradictory and messy feelings we were having.  It felt like a load was immediately lifted.

Much needed support

As time went on. we moved from NICU to the Paediatrics ward, with a horrible short stint at home in between.  Mary came regularly, talked and listened to me, and managed to get me off the ward and outside for some fresh air.

We’d experienced Hadleigh becoming a blue baby after feeding or when lying down.  In a strange way I was disconnecting from him and the situation as I had no real idea how to deal with it.  Mary talked us through our feelings while we waited for surgery and kept in touch afterwards when we got home.

What we thought was surgery to fix Hadleigh’s reflux was only the start of a realisation that the reflux was a symptom of wider spread dysmotility of his intestinal tract.

Pain became Hadleigh’s life, and in turn ours.  A normal day during much of his first two years consisted of hours of screaming.  This would lead to us driving up and down the Waikato Expressway for up to five hours each night.

But people don’t believe you when you say your baby has screamed for five hours straight.  They hear exaggeration at every turn which isolated us and we began to second guess everything we thought we knew.  As a mother, I felt ineffective and unworthy.  There was an overwhelming sadness.  Perhaps this boy would have a better life if he had different parents who knew what they were doing.

A voice for Hadleigh

We were drowning in Hadleigh’s pain, and our voices were fading with doubt.  Things needed to change, and that’s when Cynthia stepped in.  Mary continued her listening and supportive ear for us, as Cynthia stepped in for Hadleigh.

She met us, she listened and she heard.  She was on the other end of the phone when the screaming had been going for hours and she had a strong voice.  When Cynthia walked into the room our worlds changed and we were taken seriously.

Moving past the pain

Starship’s pain team and Paediatrics surgeon developed a plan which we worked our way through until we hit the magic mark. In January this year Hadleigh had an ileostomy created in surgery and a simple switch from morphine to oxycodone.  Once we moved past some post-op complications and made it home, we met a new child.

Hadleigh’s pain was drastically reduced and easily controlled.  We could leave the house and buy groceries and take him to the park. We even heard him laugh for the first time.

As soon as the pain was controlled, and we took his large bowel out of play, improvement was visible in all areas. By his second birthday he had gained weight, learned to walk and is now working on counting to five. Our days are still filled with meds, continuous tube feeds, maths and bowel issues. But the scales have finally tipped and those things are now peripheral to the joy, learning and personality we get to experience with our boy.

True Colours stepped in just as we were feeling close to stepping out, and they advocated for both Hadleigh and us.  They’ve helped us learn to trust our voice and our gut. They are always there to work through any issues we may be having.  Our voices are stronger because of them.  But most importantly our boy is stronger and that is a direct result of their excellent advocacy.