Why?

Posted by Rebecca Highton on 21st November 2019 Additional Needs, Advice & Support, Disabilities

A question I have asked myself nearly every day over the last three years.

Why is my son disabled? What would he have been like if he wasn’t? What does the future hold for him? Why didn’t I stop it?

That last question has haunted me. For three years I have blamed myself for Alfie being disabled.

Thinking I should have known something was wrong and got help sooner.

Yet I did everything I could. I was in the hospital, I was on the doppler, everything was fine with readings for both boys.

The twin to twin lasted a minimal amount of time and yet I still felt to blame. Still felt like I had let Alfie and Rory down.

I was left to think that for three years. No one ever told me there could have been another reason.

The staff at the RVI were great and always so supportive, but it’s likely they didn’t know of the poor care Alfie had received at the other hospital because they never received Alfie’s full records, just a small amount of them.

They say hindsight is 20/20, and I completely understand what that means now.

At the time, you listen to the doctors and nurses because they are the experts.

When they tell you something is normal you believe them, when they tell you that “these things happen” you think they must be common in premature children; when they tell you oxygen saturations below 90 are good, you accept it because who are you to question the expert?

But things start to unravel when you go to another hospital.

A hospital where the care is second to none and is called the ‘Great North Children’s Hospital’ (GNCH). The clue is in the name as to the care your child receives.

Yes, Alfie was in SCBU which is in a separate wing to the GNCH, but the doctors and nurses were the same- the best in the country.

It soon became apparent when simple things like changing nappies was done so differently; cleaning procedures were meticulous and the care was not just for the child, it was for the whole family because the staff knew the mental effect this was having on us all.

When doctors ask you questions about your child and they tell you the information you have been given previously is incorrect, you start to panic.

You worry that you have been negligent. That you haven’t protected your children from the people you trusted to care for them. But how could I have known?

It has taken three years to get to the stage where we are finally getting some answers, and it will be many more before the answers are meaningful and give us some closure, but that is a fight I will continue.

Our little boy deserves it and I’ll make sure he gets justice.