Family Stories - Aaron

Aaron was born on the 10th September 2007, by emergency caesarean. He presented blue, floppy and not breathing. It took the paediatric ‘crash’ team 22minutes to resuscitate Aaron...the longest 22 minutes of any parent’s life.

From there Aaron went to the Special Care Baby Unit, before being transferred to a local paediatric specialist unit. He spent 8 weeks in this unit, most of which he was invasively ventilated, before being transferred back to his local SCBU. He spent a further 12 weeks here, requiring ventilation support at night. In his first 20 weeks of life he underwent various tests to try to determine a diagnosis...none were successful.

In January 2008 Aaron was transferred to the Manchester Children’s Hospital, where they performed a muscle biopsy. Finally nearly 5 months later we had a diagnosis... Myotubular Myopathy. Although we had a diagnosis we were no nearer to finding the answers to our questions. We found the Myotubular Trust on the internet and they put us in touch with other Myotubular families.

Aaron spent a further 8 months in Manchester Children’s Hospital, being supported by mechanical ventilation at night. Due to his condition he was prone to chest infections, and with each chest infection came a respiratory arrest and a trip to ICU. Finally in August 2008, after a big arrest Aaron was given a tracheostomy and was mechanically ventilated 24 hours a day.

Although this may sound traumatic, for Aaron it was his way forward. He became so much stronger, was able to do so much more, and he loved his life.

On the 28th August 2008, Aaron was once again transferred to another hospital. Booth Hall Children’s Hospital. To the Transitional Care Unit. This unit was a ‘home from home’ unit. The children were allowed out of their beds to play together on the floor. They watched the big TV. Went on daytrips. Went to the local playgroup. Everything a ‘healthy’ child would do.

Eventually, in April 2009, 19 months after being born, Aaron came home for the first time. He loved it. He settled in immediately and we all enjoyed being a family for the first time. He went to our local playgroup and made friends easily. He went on trips to the park to feed the ducks and geese. His favourite place though was the Trafford Centre. We allowed Aaron to lead as near a normal life as possible.

Aaron had various admissions to hospital due to respiratory infections, but each time he came bouncing back stronger...until his last admission in March 2011. Aaron was admitted with a chest infection and collapsed lung, which he recovered from within a week. However, on the night of the 13th March we received a phone call from the ICU nurse looking after Aaron. Something was wrong but the doctors were not sure what. We rushed straight there to be with Aaron.

On hearing my voice he opened his eyes and reached out to hold my hand. This little boy looking at me didn’t look like my little Aaron. He was grey in colour, his stomach was bloated, and his little body was lifeless. The doctors ordered an ultra sound which showed his liver was bleeding. The doctors and nurses fought all night to keep him alive. He had numerous blood transfusions and all kinds of medication pumped into his little body. In the afternoon of the 14th March he was sent for a CT scan. The news was not good. Aaron’s liver was now bleeding uncontrollably, and there was nothing anybody could do. Aaron passed away at teatime on the 14th March 2011, in his mummy’s arms.

Another statistic to this awful condition. But we will not allow his death to be in vain.

By raising awareness and by fundraising/donating, we can help to raise much needed funds to help the precious research into this condition.

Please help children like Aaron.