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The baby who helped to create pioneering ‘brain-washing’ treatment

When Isaac was born 13-and-a-half weeks early. Steve and Becky didn’t know how serious their situation was. They were first-time parents, and at first, their baby seemed to be doing fine.

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“But when he was 48 hours old, he had a massive brain haemorrhage on the right side of his brain and a small one on the left, and another in his lungs,” says Steve.

“We weren’t allowed to see him for that 48 hours – we were given a polaroid picture, but he was all battered and bruised and had wires coming out of him.”

Doctors told Becky and Steve that Isaac would need intervention, and suggested a new treatment they were trailing. Drift therapy was developed in 1998 and trialled from 2003 by Andrew Whitelaw, professor of neonatal medicine at the University of Bristol and Ian People, consultant neurosurgeon from University Hospitals Bristol and Weston NHS Foundation Trust.

Short for ‘Drainage, Irrigation and Fibrinolytic Therapy’, Drift treats babies with serious brain haemorrhage, known as intraventricular haemorrhage, which can lead to severe learning impairment and cerebral palsy. It aims to reduce disability by washing out the ventricles in the brain to remove toxic fluid and reduce pressure.

Bleeding into the fluid spaces of the brain is one of the most common consequences of being born prematurely. These bleeds are often further complicated, causing a high risk of learning difficulties and cerebral palsy.

“The doctors sat us down and explained what our options were, and we decided to give Isaac the best chance possible,” Steve says.

Steve and Becky, who live in Yate, Gloucestershire, signed a consent form to allow doctors to perform Drift, and then waited a couple of weeks until Isaac was strong enough for them to carry out the procedure.

“Things were a bit dicey and there was a point we didn’t think he’d make it,” Steve says.

“One evening, doctors told us they’d done everything they could and to expect a phone call. We went home from the hospital and didn’t sleep that night. In the morning, they rang and said he’d made an amazing recovery.”

Steve and Becky knew they were taking a risk, and doctors told them to prepare for the worst.

“We wanted to give him every opportunity,” Steve says. “We were hopeful it would help, but we knew we wouldn’t be able to see until he grew older.”

The procedure lasted around 28 hours, during which time Isaac was put under anaesthetic and hooked up to a clot-busting fluid that entered his brain. Steve and Becky were allowed to sit near him, and Steve remembers nurses coming in to make sure Isaac was okay.

After two months of slow recovery, Isaac was allowed home. At first, it was scary. Steve and Becky slept with the lights on, because that’s what Isaac was used to in hospital. Slowly, they all adjusted to their new lives. But as Isaac grew, they didn’t know what to expect.

“We weren’t completely aware of how the procedure could affect him, because the brain is so complex. We were looking for signs for everything – we were amazed at every milestone he got to, and each one meant more to us because we weren’t expecting him to do it,” Steve says. “And he’s carried that on throughout his whole life.”

Isaac Walker aged 19

Isaac has gone on to become one of dozens of babies who have helped to prove the treatment is worth the NHS investing in; this week, researchers published a ten-year follow-up in the journal Archives of Diseases in Childhood.

Researchers from Bristol Medical School assessed survivors from the group of premature babies with severe brain haemorrhage who were recruited for a trial that compared to babies given standard treatment using lumbar punctures to control expansion of the ventricles in the brain and reduce pressure.

Survival without severe cognitive disability was 66 percent in the Drift group and 35 per cent in the standard treatment group. They also found that infants given the DRIFT treatment were also more likely to attend mainstream education.

Steve isn’t surprised at the results, because he has ‘living proof’ that it works. Isaac, who has mild cerebral palsy on his left side, is now at university, studying software engineering, although

Steve isn’t completely surprised at Isaac’s latest milestone.

“We started to realise how special he was because of how doctors were reacting to his progress,” Steve says.

“Professor Whitelaw followed Isaac for many years, and has kept in touch. He’s used Isaac as an example when he’s given speeches about Drift, and shown his brain scans. He’s always been amazed by Isaac; he’s a man of few words, so we knew Isaac must have done really well because he was showing emotion.”

No one knows exactly what would have happened to Isaac if he hadn’t received the Drift treatment, but Steve knows their situation would be different.

“His brain wouldn’t have recovered and rewired the way it has,” he says.

While Steve doesn’t know why Isaac did particularly well on the treatment, he knows his determination has probably helped.

“He’s always been confident, and as a child he was very determined, which has helped him as he grew up. He’s taken everything in his stride, not worried about who he is and what he can and can’t do, and that’s probably helped him.”

Isaac describes the experience of being somewhat of a poster boy for the procedure as ‘weird’.

“It’s surreal to look back on something and think that if it didn’t happen, I wouldn’t be here,” he says.

“If I hadn’t got the Drift procedure, it would’ve made a massive difference in the way I live, but because I did, I don’t know any different to how I’ve grown up.”

He says his progress is a testament to the procedure, which has always been in the background. But there’s still a way to go before the NHS rolls out the treatment so it’s accessible for all premature babies who need it.

This will be a major effort, according to Dr Karen Luyt is leading the research team who carried out the 10-year follow up, after Whitelaw handed the responsibility to her when he retired.

It’s a complex treatment that can be damaging if it’s not carried out properly, and there will only be four centres in the UK where the Drain procedure can potentially be delivered. Luyt needs to now convince the National Institute of Clinical Excellence that they should fund the procedure for the NHS.

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The family experience of brain injury

After a person acquires a brain injury, the impact on the whole family can often be life changing as they adjust to a new reality and relationships come under intense pressure…

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Karen Ledger (KL): When brain injury occurs, it’s like a bomb going off in the family. Life will never be the same again for any of the members of that family.

People will be shocked, bewildered and overwhelmed, and they then have to go through a complicated process of adjustment, and people reach that adjustment at different stages.

The person with the brain injury will generally have a neuropsychologist assigned to support them. Most will pay attention to people’s feelings and emotions, but the rest of the family may not have any psychological support.

This situation doesn’t get better of itself without professional input, it can get worse and people’s mental health can and often does spiral down.

Louise Jenkins (LJ): It’s a particular challenge if you’ve got someone with little or no insight. They often won’t recognise the need for or be willing to engage with neuropsychological treatment until much further down the line, by which stage, the family may have entered a more advanced stage of crisis and their whole family unit may be at risk of breakdown. There are complex emotions involved in the adjustment process following trauma which include shock, guilt and loss.

KL: That’s a scenario we see a lot. The client’s relationships may get to an advanced stage of deterioration and as Louise says, crisis, before they’re able to accept help. This is often because there is an immense amount to absorb from their new world of injury, rehabilitation and the medico-legal process and clients do not have the psychological space to consider how they are, never mind undertake the rehabilitation.

LJ: That’s where some of the challenges come in from the legal perspective. The compensation claim process is quite rigid in that generally speaking, only the injured person can claim for financial losses and for professional support, but we maintain that as the underpinning principle for compensation claims is to restore someone to their former lifestyle, you have to consider them both as an individual and as part of the family unit. We try to build into the claim some therapy sessions not only for the injured person but also for their spouse and their children.

Some defendants (compensators) say they’re happy to support that because, if the family unit breaks down and the uninjured spouse has been providing a lot of the day-to-day support, prompting and encouragement that the injured person needs, the cost of commercial care to replace that support is significantly more expensive than the amounts you can recover in a claim for support provided by a family member. It is also about embracing the spirit of the Rehabilitation Code and Serious Injury Guide in looking at the wider family need.

KL: Often, people can’t work anymore; they feel their work is taken away from them. People get their sense of identity out of work, as well as from being a spouse or a partner, a father or a mother. And if they lose their ability to earn and their relationships start to deteriorate these are often perceived as more failure and thereby serve to reduce a client’s confidence and self-worth.

LJ: It is akin to a bereavement process for the uninjured partner, yet the person is still there with you.

KL: People don’t have to have a death to experience loss, and loss can activate a bereavement process. So they’re grieving for the person they once knew, and now they’ve got this new person which makes adjustment to the injury complicated. And the thing about brain injuries is they’re hidden. The person looks the same but behaves differently to how they did before. It understandably takes a long time for clients and family members to really grasp the effects of brain injury, because they’re often traumatised, angry, discombobulated and distressed.

The family that includes somebody with a brain injury goes through a process of understanding, just as the client hopefully does.  It’s a complex situation trying to comprehend what a brain injury means whilst feeling bereaved.

Family and children’s therapy is relevant too. Children often get missed because they deal with loss and trauma in different ways to adults. Children tend to get on with their lives, as if it’s not happening, so they need particular attention. They won’t be talking about it so much, but they’ll be experiencing it. The sooner that’s managed by specialists, the better it will be for children in the longer term, giving children the best chance of allowing normal development to take place.

LJ: It’s difficult because there’s a significant investment of time and energy put into implementing a rehabilitation programme and support around the injured person. This is integral to the claims process. The spouse can feel as if all the focus is on the injured person and they’ve been left out.

From a legal perspective, we try to involve the uninjured spouse as much as possible in discussing what we’re doing and why we’re doing it. We try to weave in that therapy support for the uninjured spouse so they come along the journey with us rather than becoming a disrupter to the rehabilitation programme because they feel excluded and unsupported. If securing interim payments through the claim to fund support is challenging at an early stage, our in-house team of client liaison managers, all of whom have a healthcare background, can provide time and input in discussing the challenges and in signposting for support both for the uninjured spouse and children as well as for the injured client. There are some really valuable resources for children, for example, which explain some of the problems that can arise in a parent who has sustained a brain injury to help them to understand and come to terms with changes in the family dynamics.

KL: People affected by brain injury can feel deserted by their partner and like a single parent.  This is because they’ve lost their partner’s contribution to childcare and work in the home. The complexity and challenges of living in these circumstances should never be underestimated.

LJ: At the point of injury, they are in shock and just want to be there for the person who’s injured.  I’ve worked with a number of people where the grief and adjustment process is very substantially delayed. These delays extend to weeks, months or even years.

They’re in a fight/flight/freeze situation. They’re managing a situation that’s about life and death initially in the most serious cases. When the acute stage is over and they have some space to start thinking about themselves, rather than the person who’s injured, they can start reflecting. It’s an emerging awareness that it’s never going to be the same again, that some degree of permanence will remain with the injuries, that this is how it will be in the longer term and a realisation that you need support to adjust to the new normal.

KL: It takes a while for that realisation to come in. I am often working with partners who are in that process of adjustment and what initially attracted them to the person pre-injury has been lost post injury, for example agile thinking and intelligence.  Moreover they now find themselves in a caring role and one where many strangers are entering their home and talking to them in alien language!  It’s not surprising that for many people this is often too challenging for them to manage and why therapy is needed as soon as possible for clients to regain their own personal power as soon as possible. They will have a private listening, respectful and tender place for them when the rest of their lives are so exposed.

LJ: They don’t know where that injured person is going to land with their recovery in the longer term. There’s a natural recovery process of a minimum of two years following brain injury, often longer, and they don’t know how much recovery the person’s going to make. They’re living with that uncertainty for a long time before being able to understand and adjust to what the long term will look like, often with significant physical, cognitive and behavioural changes which place great strain on sustaining relationships. Independent family law and financial advice is often essential to protect both parties in the event that the relationship does break down.

KL: I believe that acquired head injury is usually devastating to the person and those around them.  However, in my experience, people are often amazing in how they find the strength to establish new ways of being and making their life work for them.  Therapy can often speed up that process because clients feel heard, respected and understood, a powerful combination for a restorative process particularly when they are so often feeling powerless.  This process can help families stay together or decide to go their separate ways and with support they are more likely to do this without acrimony and additional trauma.  Observing and supporting clients and their loved ones to dig deep to find the strength and commitment to establish a new life is such an amazing privilege and honour for me.

LJ : When the claims process is managed by expert serious injury lawyers, early access to specialist rehabilitation and support will enable an injured claimant to restore their life to the best possible position and allow them to maximise their potential for the long term, restoring a sense of control and positivity for the future. Working together with therapists like Karen is essential to ensure that a multi-disciplinary network of support can be put in place in order to support an injured person to achieve their goals and rebuild their life as an individual and as part of a family unit after a life changing injury.

Louise Jenkins is a partner at Irwin Mitchell and leads the serious injury team at the firm’s Sheffield office. Karen Ledger is managing director of KSL Consulting and a therapist, counsellor and supervisor with over 30 years of experience.

 

 

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From brain injury to Bafta

Hannah Currie lovingly captured her uncle’s struggle with brain injury through a lens, and shared his story with the world, as Jessica Brown reports.

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Beth Allan and Hannah Curry

When they first got together, Paul and Lindsay Devereux didn’t seem like the most obvious match. Paul was from Dublin, and he ticked more than a few of the stereotypical Dubliner boxes – he liked a pint and didn’t take himself too seriously, and he had a thick Dublin accent.

Lindsay was the sensible one. She was a nurse from Scotland, with a master’s degree. But they clicked.

They both loved travel and adventure, and travelled the world together, driving through the US in a campervan.

On their return, they settled down and built a home together in the mountains outside Dublin. Paul worked as a painter and decorator – until he had an aneurysm ten years ago.

He had surgery to remove a second aneurysm from his brain, leaving him with a brain injury, and severe short-term memory loss.

Now, Lindsay gets up at 5am to get to Dublin, where she works as a nurse, and on top of this she helps care for Paul.

The couple are in debt, and they don’t have much support outside immediate family.

But this year, things took a turn for the better after a documentary about the couple, made by their niece, documentary filmmaker Hannah Currie, premiered internationally and won a Bafta Scotland award for ‘best short film’.

Currie, 31, has wanted to make a film about her uncle since the injury. She worked in media, but worked on the production side, helping other people make their films.

“I always wanted to be a documentary film maker, but thought it wasn’t accessible to me as a woman, and as someone who didn’t have the confidence in her abilities,” Currie tells NR Times.

“But the urge wasn’t going away, and I decided to go back to university and do a documentary directing course, which was the first time I picked up a camera.”

After completing her Masters in Screen Documentary course, Currie successfully applied for funding from the Scottish Documentary Institute and finally got to work on the documentary she’d been wanting to film for ten years. But it was a much more difficult experience than she could’ve anticipated.

“It was a really hard film to make because there’s so much to their story,” she says. “Paul’s aneurism and the fall-out from that affected every area of their lives.”

Paul smokes and drinks, she says, and doesn’t understand why this puts his health at increased risk, given his medical history.
But his maladaptive behaviours were one of the reasons she wanted to make the film in the first place.

“Some members of my family got frustrated at Paul because he kept on drinking and smoking. They said he needed to take responsibility for his behaviour. I was curious to hear his side of the story; if you’ve gone through this and your only crutch is smoking or drinking, then why not? I was keen to explore that.”

But somewhere along the way, the film became more about Lindsay, and not just Paul.

“Paul’s not going to get better, he’ll make small improvements but he’s always going to live with his injury. But I hope my aunt will find light in the situation.”
Currie hopes her aunt can start speaking to other families going through this and help them.

“If something good can come from this, I think she’ll feel validated that her decision to stay in this situation and sacrifice her life for another person will be worth it.”

Her grant was for a short film, and Currie found it difficult to know which bits of footage to leave in.

“When I finished it, I thought it missed the mark. But when people started contacting me, especially families of people with brain injuries, saying the film had had a big impact on them and brought them a lot of comfort, I realised I was being harsh on myself.”

Devlin says she felt enormous pressure to do the film, and her family, justice, especially because the funding came from public money.
She also struggled to get a balance between handling it sensitively and making something that people would want to watch.

“When you’re making a film, you’re making a piece of entertainment. It needed to hold people’s attention long enough to get an important message across.”

 

Paul Devereux

The film’s title, ‘That Joke Isn’t Funny Anymore,’ references Paul’s habit of repeating jokes.

“It’s funny and bizarre to watch, then it becomes not so funny. But I wanted to do him justice, because he does talk about things other than jokes.”
She was in her early twenties when it happened, and she remembers her uncle being a ‘burst of energy’.

“He’s a great guy. He hasn’t changed. If you catch him on a day where he isn’t too fatigued or he hasn’t had a drink, you can have a conversation with him, but he’ll forget things when he gets tired.”

 

Hannah Currie and Paul Devereux

Currie had sleepless nights over the decisions she made when editing the film, but her uncle was ‘over the moon’ when she sent him the final cut.

“Even though it might’ve been difficult for him to watch, he needed to sign it off. I sent it to him and he said everything in it was true.”

Currie says the feedback she’s had since the film’s release has been ‘overwhelmingly positive’. It premiered at DOC NYC in New York and DOCFEED in the Netherlands, and Currie took Lindsay with her.

“She’s been suffering in silence for ten years and had to get on with it and provide. A lot of friends abandon you when this kind of thing happens, because they find it difficult to be around someone who displays this behaviour,” Currie says.

The reaction to the film is helping her learn to believe positive feedback and be more confident in her abilities.

“The first minister Nicola Surgeon tweeted about it, she probably didn’t feel the need to be nice, she probably just liked it,” Currie laughs.

“I might not be super confident, but I have empathy with my characters and I’m able to make people feel confident enough to tell me their stories,” she adds.

You can watch That Joke Isn’t Funny Anymore on BBC iPlayer here.

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Time for domestic abuse legislation – Lord Ramsbotham

Lord Ramsbotham, treasurer of the criminal justice and acquired brain injury interest group and former chief inspector of prisons, has vowed to help get screening domestic abuse victims for brain injury into legislation

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Lord Ramsbotham

Earlier this month, MP Chris Bryant put forward two amendments to the Domestic Abuse Bill, stated that female prisoners must be screened for acquired brain injury, including concussion, within two weeks of starting their sentence.

Bryant also put forward an amendment that women who have been the subject of domestic abuse should be screened for traumatic brain injury.

Ramsbotham is in touch with Bryant and has told NR Times he will take the amendments through the House of Lords, propose them at second reading and follow them through to the committee stage.

“I’m looking forward to the Domestic Abuse bill coming to our house in the autumn. I think they will have a lot of support because there’s a lot of cross-party interest in all these issues,” he says.

Testing female prisoners for brain injuries when they come into a prison could help to improve staff members’ understanding of what treatment the prisoners will need, and could help give rehab efforts sharper focus, he says.

Ramsbotham says he first became an advocate for improved support for prisoners with a brain injury when he was chief inspector of prisons in the late 1990s, on a visit to young offender’s institute HMP Glen Parva in Leicestershire.

“I found a 16-year-old boy sitting on his bed, rocking. He’d suffered a brain injury when he was three months old, when his dad picked him by the ankles and swung him against a radiator. The prison could do nothing for him.”

Ramsbotham then visited a brain injury unit at St Andrews hospital in Northampton.

“I discovered there that the treatment of brain injury was completely alien to what was going on in prisons because the treatment at St Andrews required stimulation – not being locked up in a prison cell for 23 hours a day.”

In a follow-up report at the time, Ramsbotham called for assessments, arguing that they help shed light on which part of the head has been hit or damaged, which can help staff predict a prisoner’s behavioural outcomes. But it was turned down.

There hasn’t been any progress in legislation, he says, since then-prime minister Theresa May dropped the government’s commitment to a prison reform bill in 2017.

“So when the criminal justice and acquired brain injury interest group asked me to be their chairman, I leapt at it because it seemed it was the place for which I could continue my campaign,” he says.

Ramsbotham hopes the reform will come soon, especially since the Covid-19 pandemic has highlighted the ‘unacceptable’ conditions in prisons, where mental health, he says, has come to the forefront, particularly those with brain injuries, he says.

Ramsbottom is strongly in favour of link workers going into prisons and making contact with people with brain injuries during their time in prison and for six months following their release.

“I don’t think the probation service is yet attuned to the needs of people with acquired brain injuries. We no, at the last count, only 18 per cent of community commissioning groups realise they have any responsibility for funding probation. I would wish to get that amended, too.”

The second reading of the Domestic Abuse bill in the House of Lords yet to be scheduled.

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