In 2011, Odhran Varney was born to Nicole and Philip Varney. He was a beautiful baby boy and had already stolen the hearts of his parents the minute they laid eyes on him. Nicole’s afterbirth glow was soon interrupted, however, as the medical professionals delivered Odhran’s suspected Down syndrome diagnosis while she was alone. They didn’t wait for her husband or her family, and there was no understanding in their voice; Just a diagnosis and discharge papers.

Through the next several years, Nicole and Philip loved Odhran despite his diagnosis and he completed their world. As Odhran grew older, the Philip’s knew something wasn’t right with their son’s health, and that’s when they turned to the doctors for answers. Below is their story, told by Philip Odhran, and why as a parent you should speak up when you know the medical staff isn’t doing everything they can or should.

I’m not sure where to start. Its a little over 2 years now since Odhran’s death and i have found it hard to speak to anyone about this. My son was born in 2011. His mums (Nicole) pregnancy was normal throughout. No cause for concern and we were 26 and 24 y/o meaning we were low risk. He was born and we stayed in the hospital for two days thinking everything was ok. This is where our experience with medical staff soon soured. Nicole was told of his suspected diagnosis while she was alone. She was hysterical as we had no clue anyone even suspected he had Down syndrome. Nicole had even been told to pack her bags, you're going home. She received no empathy, no support and not the grace of having myself or her family by her side to help process the news. 

Over the following months we thanked God (even though we aren’t particularly religious) that all the horror stories we had heard about associated illnesses that come with Ds weren’t there. Heart great, lungs great, hearing and sight. He was an absolute miracle and such a joy for everyone to be around. We couldn’t have been more proud. 

As he grew older and around 2 y/o he started to have trouble going to the toilet. He would scream in pain and it was glaringly obvious something wasn’t right. We took him to the doctors between the age of 2 and 4 at least 20 times. Always the same answer. He has Ds and constipation was a side effect. We placed our trust in the professionals. I will never forgive myself for that. After multiple trips to the hospital A&E and being made to feel like we were wasting their time. The look and lack of belief in what we were telling them was so evident. Our son was not the weight his age should have been but still it took us 2 years to get a serious appointment to have a look at the problem. 

So after 2 and a half years of being told his toilet problems were merely constipation we finally got his diagnosis. Odhran had both Chrons and Colitis. His insides were in bits and covered in ulcers. No doubt at all that it was so much worse because of the years he suffered while we tried to get anyone to listen. We put our faith in the doctors and the hospital only to be made to feel like we were parents of a boy with Ds and side effects like this were expected. We wrestled with the looks of the doctor, nurses and hospital staff and their words telling us we were wrong. 

Unfortunately his diagnosis proved to be too late. Chrons and colitis rarely kills people and definitely not in early stages. Odhran’s had advanced to the point he was in the hospital 10 times in 12 months. He was put on an immuno-suppressant drug which we as parents were against as he already had a  low immune system due to his Ds and he was 3 years below the minimum age for the medication. Even now we were told in no uncertain terms this was the right and correct path to follow. It wasn’t. 

On Christmas day 2016, Odhran was rushed to hospital where he suffered a cardiac arrest. The nurses sprang into action and bought him back only for him to suffer a second and fatal one. The reason? A minor virus that isn’t a killer and barely even produces symptoms. His autopsy report and cause of death states 'probably sepsis'. Why probably? Because a sepsis check wasn’t completed when he first arrived at hospital, an hour and a half before the first cardiac arrest. This should have been of the highest priority as he was on such a strong immuno-suppressant and in such a high risk group. 

Throughout Odhran’s life he was a miracle and the best thing that happened to us. To the medical system he seemed an inconvenience. He was let down at every turn and as parents we feel responsible for placing so much faith in people of authority. 

A message to anyone in similar circumstances would be to trust your gut and believe in what you think and know. Do not let someone, even if they have a medical degree, tell you that you are wrong. You are a parent of a beautiful angel who happens to have Ds and unless that Dr. or nurse has a son or daughter with Ds always take their advice with the upmost caution. 

This has been the first time I have put this in to any type of words since it has happened. 

Our next steps? We have a solicitor fighting to get an inquest into his treatment. We don’t want miracles and we might not get answers.

This needs doing for our son who deserves the best even in death as he should have received while he was alive. 

Thank you. 

Phil