Additional Needs

What Doctors can’t tell us when they make a diagnosis

Posted by Stephanie Swann on 1st March 2021 Additional Needs, Advice & Support, Disabilities

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My son just turned 2 recently and I’ve been thinking and reflecting back to his birth and those early days quite a lot.

We’ve come so far.

My son was born in 2019 and during birth, sustained a severe brain injury due to lack of oxygen.

The circumstances surrounding his brain injury still remain unclear and we may never find out the exact cause.

When I think back to how I felt during those first few weeks I can honestly say that there hasn’t been another time in my life when I have ever felt so vulnerable or helpless.

I would look to the Doctors and expect them to have all of the answers.

We assume Doctors know every answer. But unfortunately sometimes they just don’t. 

Although I am incredibly and eternally grateful to some of the doctors that have worked hard to keep my son alive, to diagnose and treat him over the last 2 years, (especially his wonderful consultant paediatrician who has known him since the very day he was born and is our go to gal).

They themselves and the tests they carry out are not infallible and they are not superhuman. 

They do get things wrong, they do make mistakes and unfortunately they do not always solve the puzzle. It is ok to question them and get a second opinion. 

Sometimes we can hang far too much on what they say. 

Whilst NICU doctors were telling me my son’s prognosis and apologising for our circumstances I remember feeling that it must be really terrible if they are apologising. 

What they couldn’t tell me though was the amount of love and joy that he would bring to our family. 

They couldn’t tell me that I would grow more as a person in two years than I could have ever imagined. 

They couldn’t tell me how my son would surprise them all time and time again with the things he would go on to achieve.

They couldn’t tell me how I would meet some of the most incredibly kind, supportive and understanding people (other HIE parents) that would fast become my friends. 

They couldn’t tell me that I would develop the confidence and skills to become the best advocate for my son.

They couldn’t tell me that I’d be tested beyond my limits and withstand so much trauma, stress and worry and still have the resilience to keep getting up every day and trying to be the best Mum and carer for my son. 

They couldn’t tell me that I would gain more medical knowledge than I thought I’d ever be capable of learning.  

They couldn’t tell me that disability is not a tragedy. 

They couldn’t tell me this because often they see a patient, an NHS number, a case study or a set of symptoms.

They see a child living a none ‘typical’ life. 

They don’t always get to see the joy that fills you up once you pick through the wreckage and put the pieces back together in your own special way. 

It is our job as parents to show the world that disabilities and differences are not tragedies and there is so much to celebrate and be grateful for.