Twice a year the De Gennaro family travels 600 kilometres to Rome from their hometown of Crotone in the south of Italy.
They are not tourists. Ugo Matteo, their eldest son, suffers from a congenital heart disease which in the very young is known as blue baby syndrome.
Ugo Matteo de Gennaro said: “ I can’t play sports as much as I want. Not football or basketball. I can play a bit but not as much as other kids. They can play for one or 2 hourrs. I can play for only half an hour.”
Ugo needs special medical check ups every six months at the Bambin Gesu Hospital.
The disease he suffers from is relatively rare affecting about 400 out of a million.
Ugo underwent surgery when a baby.
Cardiologists must now decide whether aged 14, he needs a second surgery.
Giacomo Pongiglione, Paediatric Cardiologist said
“This patient suffers from what doctors call Tetralogy of Fallot.
The flow of blood from the right ventricle in his heart to the pulmonary valve was partially blocked.
He underwent surgery; the obstruction was eliminated, and the flow right ventricle outflow was enlarged.
But by doing so, the pulmonary valve was destroyed.
Over time, that destruction causes a chronic flooding in the right ventricle.
To prevent further danger to him , we must decide if, and when, we must perform new surgery to implant a new pulmonary valve”.
The disease is complex and cardiologists specialising with children often lack accurate, in-depth guidance on to how to proceed.
In a pilot experiment, Ugo´s clinical data has been included in a new European-wide database.
The network should allow Ugo´s cardiologists to compare his case with other similar cases around Europe, so they can share information and plan Ugo’s treatment in a better way.
Pongiglione added:“So the network has confirmed that there is in Europe a patient quite similar to mine.
“ It is patient number 57, a boy from London.
If we open the database for this patient, we will be able to analyse his clinical details; here for instance we have a 3-D graphic reconstruction of his right ventricle.
And we can see from this data that this British boy was successfully operated by surgeons; the implant of a new pulmonary valve was useful for him; he is healthier and doing fine.
By studying this similar case, I can feel more reassured about my own case; I can think, if that surgery worked for that boy, it can also work for my patient”.
The network is still experimental and part of a
European research project aimed at providing paediatricians with new tools to tackle not only heart disease but also brain tumours and rheumatism.
Joerg Freund, Co-ordinator, Health e-child Project said: “The plan of this project is to build a database of biomedicine for paediatrics, so different institutions all over Europe have access. Some cases are very rare and sharing knowledge with other institutions
is very useful.
One centre of excellence in the field of paediatrics is Great Ormond Children Hospital in London.
At its Centre for Cardiovascular Imaging, dozens of patients like Ugo are scanned every year.
The data is collected by cardiologists and cardiovascular imaging experts, and it is all added to the pan-Europe database.
Andrew Taylor, Director Great Ormond Street Centre for Cardio-vascular MR said: “We scan them to look at what the shape of the heart is, what the size of the heart is, what the size of the vessels that come out of the heart is.”
But also importantly the function of the heart, how well the heart pumps, how much blood leaves the heart.
And then we use that information, combined with the story of the patients, the examination of the patients and other imaging investigations, such as eco-cardiography, to decide how we should treat patients, and follow them up and manage them over time”.
Computer experts in the field like German scientist Martin Huber have a key role to play.
He develops 3-D graphics that help cardiologists to consider all surgery options.
Graphics can help to determine if a patient needs full surgery or if a pulmonary valve can be implanted with new, less invasive, techiques.
Huber of Seimens said: “ Of course the heart beats, it is a moving object.
And plus, we have the additional problem with the children that the heart is not only smaller but it beats faster than an adult.
And you imagine trying to take a picture of a hummingbird’s wings in flight, that’s about what we are trying to do.
This is the biggest challenge imaginable for medical imaging, but current scanners, magnetic resonance tomography and MRI
Computer, we provide images of spectacular quality.
Our task is to transform them into graphs and present them to the doctor. “
Andrew Taylor added: “There is a lot of information that we still get from the patients that we need to put them to sleep, or where we have to get pressure data in the heart from some of these more invasive tests.
And actually if we can use these engineers´ modellings to build models where we don t have to do all that, and we can get the same information, then that would be great.
Because you can put somebody into a MRI
scanner for an hour, they can watch their favourite DVD
, we can get all the information.
And then we can plan hopefully not only the treatment, but also whether they need that treatment, or when it is the best time for them to get that treatment”.
This new scheme amounts to massive mixing of computer wizardry and scientific skills.
Its aim is simple. To ensure Ugo and other young patients lead better lives.
So they can continue doing what they enjoy most.
Ugo said: “When I play basketball, my friends say I am quite good at throwing free shots. When playing football, they say I´m a brave defender”.
Website : www.health-e-child.org