Annual Visit to the Fetal Research Center, Barcelona

Barca 1We listen to families. Then we fund research at Universities across the UK that can give them the answers they need. Together, we’re helping families discover a better life.

On 8th November 2016 a team from Cerebra visited Hospital Sant Joan de Déu in Barcelona where we help fund pioneering research.

Beverley Hitchcock from Cerebra’s Research and Information Department told us all about the visit:

“On arriving at St Joan de Déu we were taken on a tour of the facility – the largest establishment in Spain for specialist programmes. The hospital deals with maternity and paediatrics. Per annum there are 4,000 deliveries.

We were shown where expectant mothers are seen and assessed, along with an actual delivery suite and the individual rooms that mothers and their babies stay after delivery. Mothers, on average, only stay in the hospital for up to 12 hours after delivery. We were shown the paediatrics scanning facility where each room is named after a planet with the solar system painted in the room. The whole concept of the hospital is that it is interactive for children and makes them feel at ease.

Barca 2We were then shown the neo-natal department which is divided into two areas:

  • For those born full time but have complications and will need surgery
  • For those born prematurely.

Our final stop on the tour was at the Fetal Medicine Research Center. There are 70 members of the research team with 20 PhD students. Within the last ten years, with the amount of academic papers written this research is now second in the world.

We were then given a talk by five members of the Research Group.

Eduard Gratacós spoke first on the consequences of growth restriction on foetal life. He stressed the importance of combining expertise and working as a multi-disciplinary team as there is a very particular patient involved. The research programme looks at:

  • Improving detection by looking at what can cause growth restriction through malnutrition; toxics; placental disease; hormonal disturbances and stress.
  • Using new imaging biomarkers
  • By instigating new therapies

Eduard discussed the impact on society of the research. He mentioned the Inatal website which provides information for doctors and families. This includes specialised forums, pregnancy information along with news and views. There are 9.6 million visits a year to this website, with 6 million visits from the USA. Eduard indicated that he plans to have more of a collaboration with Nigel Simpson in Leeds.

Fatima Crispi then took us through the detection part of the research programme. Currently the detection rate is at 65%, which needs to improve. So the researchers have been looking at different biomarkers (those listed above). The two year project is looking at 600 small babies and what might have occurred during their foetal life. Questionnaires are completed relating to nutrition and stress. The preliminary results show that expectant mother’s protein levels are low and that there is less ferritin in the blood. Regarding stress there would appear to be a higher level of stress perception than normal amongst mothers. There is also a higher level of cortisol in the foetal urine.

Elisenda Eixarch spoke about the new image biomarkers. This includes an MRI and ultrasound both prenatally and neonatally.  These scans look at the connections, the structure and the function of the brain. A specific structure will also be looked at, along with tissue profiling. Growth restriction results in less mature and less organised brain networks. Low oxygen delivery to the brain has a profound effect on the brain as well. The programme is looking at increasing the sample size.

Francesca Crovetto talked about the new therapies around nutrition and stress. They will be starting a new study on this next year which will be partially funded by Cerebra. The integrated study is currently in the design phase but they are looking to recruit 1,200 patients in their second trimester. In relation to nutrition this will involve a Mediterranean diet. Vegetarians would have to agree to eat fish, eggs, nuts and use olive oil. To reduce the cortisol levels and to lower stress levels a Mindfulness programme will be used. This will involve a 6-8 week course with an instructor, then a follow-up and practice at home. Imogen posed the question of how they would restrict the control group from going off and changing their own diet or doing their own Mindfulness course. Francesca explained that this could be an issue but the control group would be seen more frequently and have some dietary intervention.

Georgina Feixas is a neonatal ICU nurse of 15 years and is part of the research group which she does in Barca 3her own time. She nurtures strong links with the parents and there is a 24 hour support helpline. For the MRI scan she explained that the baby will listen to a recording 15 weeks before the scan. There is also a Brazelton test and a number of further tests up to two years old. Georgina said that every family that she approached to join in the research programme always agree to participate.

You can find out more about the research that takes place at the University of Barcelona here.

 

Free Workshops

ToolkitOur Problem-Solving Toolkit aims to support disabled people and carers, as well as their families and advisers, who are encountering difficulties with the statutory agencies in relation to the provision of health, social care and education support services. This toolkit aims to unpick these problems and to develop effective strategies for resolving them.

Since its launch, lots of families have benefited from our hugely successful Toolkit and for many, it has become an invaluable resource.

To help parents and carers, as well as professionals, get the most out of the toolkit we have introduced workshops to assist them in using the information and resources in the toolkit an to assist in trying to access the services that their children need.

The workshops are delivered by Cerebra and a parent or carer of a child with a brain condition who have first-hand experience of accessing services. As these workshops take place in smaller groups, there is plenty of opportunity to share experiences and interact with others.

The feedback from the workshops that we have already held has been extremely positive and some of the comments include:

  • ‘A very interesting and informative workshop.’
  • ‘The friendly approach and delivery.’
  • ‘Working out solutions and finding out about the law, so that you cannot be fobbed off.’

Everyone who has attended the workshops has agreed that they found them extremely useful.

If you are interested in having a free workshop for your forum, syndrome support group, charity or advice service, then please contact Beverley Hitchcock on beverleyh@cerebra.org.uk.

You can download the Problem-Solving Toolkit here.

Enna Thea’s Story

Enna Thea playing all ability football

Enna Thea playing all ability football

“My name is Enna Thea Kul – Want. My friends are Ilias and Lamisha. I live on planet earth, in London. My favourite toy is Mr Banana, I sleep with him. My mum and Dad are called Catherine and Christopher.

I have Cerebral Palsy, this means that I find it difficult to walk. Sometimes when I do involuntary movements I feel like half my body is in a whole different solar system. Most people call people like me and me “disabled” but I DO NOT. I believe that it should be called “abled” SO I HOPE YOU UNDERSTAND!

I go to Columbia Primary School. I live in East London. My teachers in 2016 to 2017 are Ms Moloney and Ms Reynolds. I’m in year 5, Amethyst class.

I’m a car spotter. Here are some car names Lamborghini, Mercedes, Cadillac, Maserati and Bugatti. My favourite football team is Arsenal FC. I play all ability football with Arsenal (not the players) at William Tyndale school. My favourite player of all-time is Thierry Henry and of nowadays they are Alexis Alejandro Sanchez Sanchez, Daniel Welbeck and Mohamed Naser Elsayed Elneny”.

We are looking for young people to write about their experience of growing up with and living with a disability (parents can help if needed). The article can be about anything they like as we want this to be a chance for young people to write about what is important to them as an individual. The stories will be then collected together to form an information pack, as well as being published as individual blogs in our newsletter and on our website. If your child would like to write something for us please contact Emma Thomas on emmat@cerebra.org.uk.

Cerebra’s Christmas Dash!

We recently celebrated our 15th birthday with a festive fancy dress dash in Carmarthen! We had lots of fun meeting local families and supporters who loved joining in with the Christmas fun.

There were three fancy dress races on the day starting with a Toddler Run for the little ones, a 100m Sprint for the more athletic and a Family Fun Run for everyone to get involved in. The costumes were great with some runners bedecked in tinsel, some festive superheroes and even a family of reindeer! The cast from the local panto also joined in the fun – with great rivalry between the Dame and King Rat!

The town’s Mayor, Cllr Wyn Thomas, presented prize hampers for 1st, 2nd and 3rd place in each race along with one for the best fancy dress.  The hampers were made up of goodies donated by local shops and businesses.

Families could also visit Father Christmas and his elf in his grotto and enjoy mulled wine, hot chocolate and mince pies, kindly donated by the local Co-Op store.

Our Event’s Co-ordinator, Cecilia Bufton, said: “we wanted to make this a lovely festive fun event that the whole community could get involved in, while raising awareness and funds for the great work that we do and celebrating our 15th birthday”.

We’d like to thank all the local businesses for their sponsorship and support, the Town and County Councils for their assistance, the Town Mayor for giving his time and students from the University of Wales Trinity St David for their photography skills.

Thanks to everyone who joined in the fun and made this event such a great success – we’ll see you all again next year!