Oscar Harry Whites Story
The reason Oscars Rainbow was founded
On the 30th April 2013 we were so happy, our family was complete when our 3rd son Oscar Harry White was born, a healthy 7lb 8oz. We instantly fell in love with him. We took him home to meet the other 2 boys and muddled our way through the next couple of hectic days!
When Oscar was 5 weeks old we noticed he was struggling with his breathing like he'd caught a cold, so we took him to the doctor. He said he thought he was just a bit ‘snuffly’ and gave us nasal drops. The next day he appeared to be worse so we took him back to the same GP. He immediately phoned for an ambulance and gave him oxygen. We got to hospital and they told us they would need to intubate & ventilate him straight away (such a horrible sight to see our son on a ventilator).
We were transferred to Leeds General Infirmary and advised Oscar’s lungs had collapsed and he had Bronchiolitis. They removed the tube after 48 hours but he really struggled so they had to put him back onto the ventilator. They then moved us to Sheffield Children’s Hospital.
When he started recovering, his SATS kept dropping and he was having 'blue' episodes but no-one seemed concerned about this. They then noticed he was rather 'floppy' which we thought was just because of him being ventilated and all the drugs they had given him. We could see he was weak and all the doctors that examined him kept referring to him as being 'hypotonic'. They also kept telling us he had no reflexes, which was so confusing to us as we knew he had passed all the new-born baby checks.
He had several tests done & all came back negative which was such a relief and all that we were waiting for now was a genetic test. After Oscar had been in hospital for 3 weeks he seemed to really pick up and was moving his legs slightly and giving out lots of lovely smiles! We were told we could go home and they would contact us if anything came back from genetics. They phoned us the next day. The results were back.
We knew the results were going to be bad. We were preparing ourselves that Oscar had Hypotonia or Cerebral Palsy so he would be disabled for the rest of his life. It would be life changing for us all but we'd get through it. Nothing could have prepared us for the words that came out of the doctor’s mouth 'your son has Spinal Muscular Atrophy (SMA) type 1, which is the severest, there's no cure and no treatment. He's got a short life expectancy, go away and enjoy the rest of your time with him'.
We drove home in a state of shock and disbelief. After reading on the internet 'Progressive disease, life expectancy max 2 years, 80% would die before their 1st birthday' We started grieving for the inevitable. Every person we told was like making it more real that this was happening.
Two days after diagnosis Oscar struggled to breathe and again was put on a ventilator. In our hearts we knew what was coming and that this time we wouldn't be taking him home. The doctors spoke with us about taking Oscar off the ventilator. They tried him on the Bipap machine but our little baby was exhausted. At that point we had to do what no parent should do. We had to let him go.
We held him close, giving him cuddles, singing to him and constantly kissing his beautiful face until he was ready. He was called back to heaven at 9am on 3rd July aged 9 weeks 1 day.
To have been here for such a short time and go through what he did, fighting every step of the way, we know we have to be as brave as he was. It’s difficult every day watching our other two boys, grow and play and know that he is missing from our family circle.
Our sweet baby boy we love you millions, Mummy, Daddy, Jack Jack & Archie Parchie xx