A SICK child travels 2,000 miles away from his family in the stricken Republic of Belarus to the Republic of Ireland for an idyllic holiday organised by the Chernobyl Children's Project. A note is found pinned inside the child's jacket. It says simply. "Please do whatever you can for my child".
The child's Irish hosts offer treats, new runners, new experiences but there's a catch. The child is also brought into a foreign medical setting to be poked and prodded by doctors who speak an incomprehensible language.
The very idea of hospital may terrify the child. Pauline Enright, from Limerick, describes seeing her Russian foster son weep at the prospect of going into hospital. She did her best to comfort him, although she and the child shared no common language. Through a translator she learned the reason for his grief. His experience had taught him that children go to hospital for only one purpose to die.
In Belarus, the child casualties of the Chernobyl catastrophe are subjected to appalling, Third World medical conditions. Desperate parents are forced to purchase medicines and even surgical equipment on the black market in order to save their children's lives. Adults, too, die in hospital for no other reason than the lack of essential medicines and equipment, which is why the Chernobyl Children's Project brings so many children to the Republic for treatment and also why it sends convoys of medical supplies to Belarus.
This year, 1,200 children have travelled from Belarus to the Republic where, according to the project's executive director Adi Roche, a month of fresh air, uncontaminated food and fun can add two years to a child's life. Yet the journey to Ireland for treatment can be traumatic for some children something witnessed by Dr Owen Smith, a paediatric haematologist at the National Children's Hospital (NCH) in Dublin.
Dr Smith has been treating Denis Shershneo (9) and Andrei Lelajoski (10) for haemophilia. The boys had been attending Paul Newman's Barrettstown Camp when the project contacted Dr Smith, who returned here 12 months ago after training in paediatric haematology at London's Great Ormond Street Children's Hospital, the flagship for paediatric haematology in Europe.
Dr Smith was shocked at the primitive medical care the boys had received in Belarus. While their disorders were not caused by the Chernobyl accident itself, the fact that they receive such poor care is a direct result of the economic disaster which befell Belarus as a result.
But Dr Smith also realised it was difficult for the boys to be treated by strangers in a strange country. "You are coming to a foreign country where no one speaks your language," he observes, "and, like one boy I am treating - Denis - you have a deformity. You can tell that Denis doesn't like being on show, especially when the orthopaedic surgeons came in to see his knees. It's a bit traumatic for him anyway to be receiving medical treatment while separated from his home and family."
The morning I met Denis and Andrei at the NCH, the boys huddled together on chairs at one side of the room, immune to strangers' attempts to break the ice with smiles. They shuffled their feet nervously, while conversing almost inaudibly in Russian. Red lights flashed on and off in the soles of Denis's new runners, bought for him by his foster mother Mary Hanrahan from Limerick who knows full well that he cannot run in those shoes. To, do so, would be to risk internal bleeding. Most of the time he and Andrei are afraid to move. One knock of an ankle against a chair leg can cause internal bleeding.
There is no denying that Denis and Andrei have been having a marvellous summer, fishing, playing Power Rangers, "chasing" rabbits and using the Hanrahan family video camera to make their own "nature documentaries". Mary says that they are looking healthier too.
Dr Smith believes, however, that in some cases the distress of children like Denis and Andrei could be relieved if they never had to travel at all. He thinks the solution may be telemedicine, whereby doctors in separate locations communicate via a television cablelink which works like a telephone with a video screen attached.
Doctors can not only show each other their patients, but can also share other visual material, such as microscopic images of tissue and X rays. Telemedicine, Dr Smith believes, could bring Irish medical expertise to Belarussian children without them having to travel to Ireland and could ultimately help many more children than could ever be brought here. And with telemedicine, children like Denis and Andrei - both of whom will have to return to Dublin for surgery later this year - could be monitored by Dr Smith after they return to Belarus.
"Sometimes the patient does not actually have to be present for the doctor to make a diagnosis or to comment on treatment," Dr Smith explains. "The scenario, as I see it, would be that a child who has a specific problem in an area where an incorrect diagnosis has been made, can have that diagnosis made properly by a doctor at the other end of the telelink. The doctor at the Belarussian end could go through the clinical scenario and the person on the Irish end could come up with a specific diagnosis and recommend a specific treatment, so that the young patient does not have come 2,000 miles, away from home.
If he can get the funding, Dr Smith envisions holding a one or two hour haematology teleclinic between the National Children's Hospital, Dublin and the Gomel Regional Hospital once every two weeks. Doctors in other specialties could offer the same service. Dr Igor Iskrov of Gomel Regional, who accompanied the children to Ireland, is enthusiastic about the idea. So is the Chernobyl Children's Project.
One of its directors, Eoin Dinan, says that as welcome as convoy drivers Adi Roche and Ali Hewson are when they arrive in Gomel with medical supplies, the Belarussian doctors always say that the people they would most like to see would be medical specialists with expertise to share.
Adi Roche believes that Dr Smith's proposal "will radically improve the project's ability to deliver vital medical aid as a result of improved diagnoses. This new concept means that yet again Ireland is leading the way in offering hope to live to the children of Chernobyl."
She adds that while the misuse of technology led to the world's worst nuclear disaster, use of a video TV link to provide expert medical advice from Ireland to Belarus will harness technology to benefit the victims of Chernobyl."
Dr Iskrov said the incredibly inadequate level of treatment which Denis and Andrei have been receiving at home has led to medical complications which would never be seen in this country. In Gomel Regional, there is no such thing as Factor VIII (F-VIII) and Factor IX (F-IX) prophylaxis, a treatment which is routine in this country. These factors, which are normally found in the blood, instigate the process of blood clotting. Haemophilia A is F-VIII deficiency and haemophilia B is F-IX deficiency.
At Gomel Regional, Denis and Andrei were receiving treatment of a kind not seen here since the late 1970s early 1980s transfusions of fresh frozen plasma only when they bled. In Ireland pure F-VIII and F-XI is given to raise the level of the protein to make the child a mild haemophiliac, thus eliminating crippling complications.
The fresh frozen plasma can be dangerous. It is not virus inactivated, so that Andrei, Denis and other sick children receiving transfusions for all kinds of conditions are constantly at risk of blood borne viruses like hepatitis and HIV.
ANDREI and Denis are lucky. After both tested negative for hepatitis A and B in Dublin last week, they became the first children from Gomel Regional to be vaccinated against hepatitis A and B, although there are no vaccinations against hepatitis C and HIV.
Denis, in particular, has suffered in a way that would not occur in Ireland today. Because he has not received FVIII prophylaxis, he has developed arthoropathy, a painful swelling of the knee joints caused by internal bleeding which eventually results in degeneration of the joint. It is entirely preventable, but sadly, not for the children of Belarus.
Despite his flashing shoes and his brand new track suit, Denis's knees swell grotesquely. Both boys went home the other day but will return to the NCH for surgery. With the proper resources, Dr Smith will be able to monitor their progress on the telelink after they again return to Belarus.
While Dr Smith is delighted that Irish medical expertise can at least alleviate the suffering of children like Denis and Andrei, he warns that we in Ireland cannot be complacent about our own standards of care.
"In Ireland we don't have everything we should have for the management of haemophilia." Hospitals like Great, Ormond Street offer the best treatment in the world, hospitals like Gomel Regional offer the most minimal care and the treatment Irish children receive is "somewhere in the middle", in his view.
For Dr Smith, the prime example is the fact that in the Republic we still do not have DNA testing for inherited bleeding disorders. In the case of haemophilia, this means that Irish women with family histories of haemophilia cannot discover whether they carry the haemophilia gene, a gene which passes through the mother's side to her sons.
And once a carrier has becomes pregnant there are no DNA testing facilities for her foetus who consequently must be born into the care of an obstetrician and paediatrician who do not know if the foetus is F-VIII or F-IX deficient, thus putting the baby's life at unnecessary risk. Such babies are prone to developing bleeding problems around the time of birth resulting in huge obstetrical implications which can be prevented if haemophilia is diagnosed in utero.
Dr Smith's views highlight the uncomfortable truth that while helping children from Chernobyl may make us feel good about ourselves it cannot possibly compensate for the reality that the children of Belarus are continuing to suffer from poor medical care, and that Irish children, for all their advantages, are still not getting the treatment they deserve in certain areas of medicine.