Lewis Cefai suffered oxygen deprivation at birth. He didn’t take his first breath for 12 minutes and showed no signs of brain activity.
Every year in the UK more than 1,000 babies born at full term are starved of oxygen at birth. Sadly many of these babies will die or suffer a brain injury.
Doctors later told his mother, Sarah, that they believed Lewis’s chances of surviving without brain damage were slim. In order to save Lewis’s life and prevent brain damage caused by lack of oxygen, Lewis was given cooling treatment. The family was also given the option to be part of a trial of xenon gas treatment, believed to increase the protective effect of cooling on the brain.
Now just turned one, Lewis is a lively and inquisitive boy, full of smiles, and shows all the signs of having made a full recovery.
“I had a normal, healthy pregnancy and carried on working as a PE teacher right up until 38 weeks” explains Sarah. “We had no reason to expect any problems with the birth, but towards the end of a three day labour I was given too much oxytocin, which asphyxiated Lewis. When he was born, he was blue with flat brain activity. I kept waiting to hear him cry, but for 12 minutes he didn’t even breathe.”
Lewis was immediately transferred, with his dad Geminyah at his side, via special ambulance to the Queen Charlotte Hospital, with cooling beginning in the ambulance.
“I followed by taxi and later discovered that they’d had to stop the ambulance to resuscitate Lewis as his heart had stopped.”
On arrival Sarah and Geminyah were asked if they wanted to take part in the xenon gas trials and had to make a quick decision as treatment must begin within the first eleven hours of life.
“It was extremely difficult to take all the information in with everything that had happened. I just focussed on asking the doctor what choice he would make for his own child, and whether the xenon could be harmful” continues Sarah. “When he reassured us that xenon has no harmful side effects, we made the decision that Lewis needed any treatment available to him.”
Lewis was cooled for 72 hours and within 24 hours received xenon gas via a ventilator. The doctors explained the process was reducing the impact of the bruising on the brain caused by the lack of oxygen.
“My main concern was that Lewis would be able to breathe independently. After his start to life I fully expected him to have severe disabilities, but I felt that I could cope with whatever physical and mental disability Lewis might have, just as long as he could breathe and we could bring him home.
I was already mentally prepared to leave work to care for him, with my mum planning to leave her job to enable me to carry on working. He was just our baby and you just deal with anything that happens after that.”
After the first 72 hours, Lewis was gradually warmed up over a 48 hours period while his parents waited, hoping against hope for a sign of life. He had a blessing from the Chaplain at Sarah’s school in case he didn’t make it.
“One night I went down to see Lewis at 2am and took a photograph of his brain monitor showing activity, just so I could know that at least he had had that for however short a time. At 8lb 2oz, Lewis looked so big compared to the other babies in the special care unit, we called him ‘the giant in the corner’. My mum read endlessly to Lewis; Cat in the Cat and One Fish, Two Fish, and I talked to him continuously. It was a surreal time and we lived hour by hour and step by step” Sarah remembers.
“I got through keeping strong most of the time but a few unexpected moments made me break down. As I was unable to pick Lewis up or hold him at first I was unable to produce milk and I was devastated to have to agree to a donor providing milk It was one of the few things I could do to care for Lewis and I felt I had failed. Thankfully the day he started to reject the donor milk I started to produce it which was so lucky.”
A breakthrough came on day 4 when Lewis opened his eyes, “I could see that there was someone behind them. As he got warmer I realised just how cold his skin had felt, as gradually the doctors were able to remove his ventilator, then wire after wire.
On day 8 we had the MRI scans and were told the doctors couldn’t see anything major wrong with him. Lewis’s little hands stayed clenched shut, stiff and I found it so hard to believe he could be 100% well after what he’d been through.”
After 10 days, Lewis was finally allowed home. “It was wonderful to finally have him at home with us. He cried for the first time 13 days after he was born. What a welcome sound that was, at first anyway, he then kept going for seven hours!
Before I had Lewis I had no idea that the cooling or xenon gas treatments existed. Then it was our life saver.
The effect of the treatment Lewis had is so far reaching for our family. Not just for myself and Gem but for my mum and dad and his aunts and uncles who waited anxiously for news with us and supported us every step of the way.
All the signs so far show that Lewis is developing normally. He has met every milestone to date and, as he approaches his first birthday, is already walking. I want everyone to have access to the treatment Lewis had, it seems so wrong that another baby might not survive if they were born in a different part of the country and didn’t have access to this potential treatment.”
Background
Sparks has been at the forefront in the breakthrough of the use of cooling to prevent brain injury in babies that have suffered a lack of oxygen at birth. Clinical cooling is now used in specialist NHS hospitals across the UK.
The combination therapy using xenon gas with cooling was first used on Riley Joyce in Bristol in 2010 and was developed by Prof Marianne Thoreson and Dr John Dingley backed by Sparks funding.
Trials of xenon + cooling are now also taking place at three London hospitals including the Queen Charlotte, where Lewis received his treatment.