Odette and Lee lost their son Harry Mould on 31st March 2009
Harry had been diagnosed with asthma in 2008 following varied episodes of coughing. However he’d never been hospitalised, until March 2009; this particular coughing episode caused extensive wheezing which he’d never suffered from before.
On arrival at A&E Harrys oxygen saturation levels were high 80’s and he was prescribed hourly nebulisers overnight. The next morning he’d made a vast improvement and his consultant chose to take him off hourly nebulisers, and instead to use his inhaler 4 hourly.
This was when the first alarm bells rang for me so I discussed my concerns over the treatment plan with the nurse and we agreed he would be inhaling salbutamol 2 hourly instead. However, by lunchtime Harry was having difficulty again, he was finally put back onto hourly nebulisers from around 3pm. By 6pm he was struggling with a temperature and becoming tired. By 8pm back to back nebulisers were prescribed and after a discussion with a registrar it was agreed that if he made no improvement then further tests would be carried out; he would have an x-ray and a cannula fitted with a view to receiving salbutamol intravenously.
At 8.30pm a nurse, who we had not met before, popped her head around the curtain and asked us to follow her. To do this we needed to disconnect Harry from his oxygen at the wall (he didn’t have a mobile unit) by the time we had done this we couldn’t see the nurse. We had to ask at the nurses’ station where it was we were supposed to be going whilst carrying Harry, at which point a portable x-ray machine appeared.
The nurse returned clearly wondering where we had gone and set about clearing a bay for Harry to have his x-ray. After the x-ray we were ushered towards the treatment room. It was all very rushed and disorganised with us, again having to ask other nurses where the treatment room was. By the time Harry was laid on the bed in the treatment room he’d been without oxygen and his nebulisers for around 15 minutes. At the time, although it was playing on my mind, I assumed this was ok, and we weren’t getting any indication from the nurse or junior doctor that was citing the cannula that there was anything to worry about. I assumed they had seen all this before and everything that was happening was standard. Harry had never been hospitalised with asthma or breathing issues before so we were novices.
Whilst the cannula was being fitted Harry became tired and sleepy. We thought it was down to the overnight stay in hospital and being ill. We were obviously extremely worried but any concerns we had were quashed purely by the lack of concern from the medical team looking after him.
Whilst being carried back to his bed Harry soiled himself, which was alarming to me so I turned to speak with the nurse whom I assumed was behind us but she wasn’t. I had no idea what to do. Harry was settled back onto his bed and connected to the nebuliser and oxygen. By this point we were so worried - my husband took our daughter Jessica– Harry’s twin sister – home as we thought she’d seen enough and I needed to concentrate on Harry.
Again the nurse stood quietly at the end of Harry’s bed, completing notes and going about her duties. I was wondering if I was panicking too much because again there was a lack of reaction to Harry’s condition. In order to clean Harry up I needed to lift him, I was told this was OK and planned to walk around the bed to a chair so I could sit and hold him with his nebuliser on, but the minute I lifted him he became combative and pushed off the mask.
The nurse disappeared and another appeared, trying to help me calm him. I was holding him, asking for help, asking for doctors, then I saw his lips turning blue, and his eyes rolling. All of a sudden he was whisked out of my arms and onto a bed, connected to oxygen and equipment. I called my husband and asked him to come back urgently.
There still appeared to be no urgency, I recall standing around his bed whilst anaesthetists and Dr’s just watched him. I now know they were monitoring his breathing and after a time decided it was best to take him to theatre in case it was necessary to put him on life support. By the time we arrived in theatre that decision was made. We were asked to leave whilst they intubated him and made plans to transfer him to a nearby children’s intensive care unit.
On arrival, we were assured by the intensive care unit that Harry would be fine, though his lungs were very weak they were sure he would make a full recovery once he’d had a rest. I mentioned to the transfer team that I believed Harry had not had oxygen when needed. This didn’t appear to worry the team.
After 2 days of being strapped to wires and monitors, pumped with a cocktail of drugs and a procedure to rectify a pneumothorax the consultant decided he needed to perform a brain scan on Harry. When he said that my first comment was that he had been starved of oxygen, I knew exactly what had gone wrong.
I feared the worst but clung onto hope. My fears were realised when the consultant confirmed that Harry had suffered severe brain stem damage. It was highly likely there would be no recovery but tests to confirm this would need to be performed once all traces of medication had left his body. After 24 hours the tests proved conclusive; there were no traces of brain stem activity. Harry had gone.
Following his death I was trapped in a black hole of grief, but I also needed to know why this had happened because I knew it shouldn’t have.
An almost 3 year battle for answers followed which finally ended in December 2011. Harry’s death could have been prevented. At his inquest, the coroner found that during the time Harry was in the care of the nurse that took over his care at 8.30pm that evening he was starved of oxygen. She had not been performing the basic observations required to recognise this.
A highly regarded medical expert in paediatric respiratory medicine said it was clear to him that the time Harry was sleepy and soiled himself was a sign of losing consciousness. This time was a crucial time during which Harry was not receiving the required observations.
I have learnt so much. I felt I had let my son down by not listening to my own instinct when I thought something wasn’t right; so I have fought for answers and what I knew to be the truth about what happened since, to prove to myself that I can trust my instinct.
I now know so much about Asthma and the treatment of it;
- Harry should have been connected to a monitor checking his oxygen saturation levels – even when transferring from one area to another a mobile one should have been available
- Harry should have been connected to mobile oxygen whilst transferring from his bed to the treatment room and back
- The nurse should never have left us alone.
- We should have been fully informed of Harrys care plan at every step of the way.
- We should have known who his nurse was
- ‘Paediatric Early Warning Scores’ play an important role in assessing a patient and any practitioner following this procedure should ensure they pay attention to all triggers – On returning from the treatment room a Doctor should have been called as an emergency to see Harry.
Despite the responsibility for all this lying with the healthcare professionals, I wish I had spoken up more when things didn’t feel right.
Like most parents in this situation, we wanted an opportunity to voice our opinions to help improve the paediatric service at the hospital Along with 2 other bereaved mothers I have had numerous meetings with the hospital to discuss improvements required within their paediatric department. A new care programme was launched recently as a result of this. (For more information on this, contact Mothers Instinct who can put you in touch)
Many other changes are being implemented into the paediatric department and we will continue to work with the hospital to ensure they listen to parents concerns when it comes to their children. This is why I’m so behind Mothers Instinct. We must listen to ourselves and learn from others. We must feel we can speak up, and be listened to, when we feel something isn’t right. The NHS has so much to gain from listening to the thoughts and ideas parents and patient stories can provide, and implementing change.
Find out more about Odette and Lee’s charity, Harry’s Rainbow, set up to help bereaved children in memory of their son.