Additional Needs

Our diagnosis journey

Posted by Amanda O'Neill on 26th September 2019 Additional Needs, Advice & Support, Disabilities

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From the minute Ryan was born it was clear to the professionals that there was something going on with my newborn baby.

Unfortunately, things were pushed under the carpet and they focused on working towards sending us home as a family and not telling us the full picture of what had gone on.

For the first 4 weeks of Ryan’s life, I was under the illusion that he was healthy! we were in a bubble of happiness, he was settled, he never cried, he slept.

I was waking him up through the night to give him a bottle, I was checking him to change his nappy. He made no signs he was ever unhappy.

Being a first time, young mum I had nothing to compare him too. I thought I had a laid back easy going baby.

After these 4 weeks, everything was beginning to change. He failed his hearing test. He was screaming throughout a bottle, he wasn’t meeting his milestones.

There was something extremely concerning going on. I googled everything, I worried myself sick.

I had convinced myself there was something wrong with his little brain, I just knew there was damage but I never expected to ever get the answers I did.

My GP doctor referred Ryan back to the hospital he was born at and expressed her concern for his delayed development.

We were offered an MRI and a few days later I was told to come back in for the results. My 13-week old son was diagnosed with Cerebral palsy. At that point, I felt as if my life had fallen apart. I didn’t know what this condition meant for us I honestly couldn't have even told you what ‘Cerebral palsy’ was and here we were as parents to the most beautiful baby boy who was living with the condition.

The paediatrician asked me if we had any questions and the only question I could ask was ‘does this mean he could die’.

This question will always haunt me because I know his life will never be guaranteed, I can’t prevent infections I can’t wrap him up in bubble wrap and keep him safe forever.

That day when I went home I sat and stared at him. I cried.

I was angry that this happened to us, that this happened to him. I questioned if I would be fit enough to be his mum and at that moment I knew that he was given to me for a reason.

I promised him I would be the best mum he could ever hope for. He deserved a family that loves him and that’s exactly what we have given him.

Fast forward a bit and bottle feeds turned to NG feeding because he was aspiration on his milk. I never learned how to pass that NG tube because for me personally, it was a step too far.

I couldn’t bring myself to be responsible to change that tube. I couldn’t bring myself to be the reason my son was screaming helplessly, I wanted to be the person who cuddled and kisses him and reassured him he’s was okay.

The NG passing was the job for our community nurses. This later changed to button feeding. Bolus feeds has turned into pump feeding.

When Ryan was around about 1 we discovered that he was epileptic, so we have learned to adapt our life’s round unpredictable not so often seizures.

He now also has a dislocated hip which is another worry on top of everything else going on.

As he has gotten older we have come to accept that with his condition his body can and will change.

Things that were never once a problem because of a problem. One diagnosis always at one point leads to another!

Our whole life will be around management for Ryan. Making sure he’s got the essential equipment for postural management.

Making sure he gets the support he needs he regular physiotherapy he needs. Making sure his needs are always known and forever being his voice.