Eleanor Leahy gave birth to baby Nathan on the 12th of January 2003 in Erinville . At a tiny 725g Nathan was thought unlikely to survive. He was, however, a fighter and he clung with all his strength to life and did indeed survive. Sadly, despite this achievement the story is no fairytale. His mother has spent years looking for answers.
Being born so premature, disability was a promise from birth. A kind of ‘best case’ scenario. Eleanor had suffered for many years from endometriosis but this was not diagnosed. Contraceptives, changes to her cycle, the affects of pills, and depression all meant that it was impossible to manage. She asked to be sterilised to avoid a situation like this happening but that was not allowed. She could not decide for her own body. A failure to treat the endometriosis led to complications and problems with any pregnancy.
Now she found herself staring at her third premature son as he fought for his life. She was filled with awe at his efforts knowing, as only a mother can all he would suffer. At 12 days old Nathan’s condition began to deteriorate; the tubes that ran through his left leg began to discolor the leg. ‘I was informed that it was fine, that he was just bruised from being handled as he was so small. However the next evening, he was much worse. It was around eight in the evening and I was with his father. We asked to see a doctor as Nathan was in obvious pain and his foot and leg were completely black. We would wait two more hours after which I simply had to return home to relive the sitter. The nurse informed us that the doctor was busy and he would come as soon as he could. She added that there was nothing to worry about, that it was normal. We reluctantly left for home.’
She was extremely worried that night but there were no doctors to assess her son Nobody to put her mind at ease and nobody came to ascertain the level of the problem. The next day brought a dramatic change ‘The next morning I returned to Nathan to find him surrounded by medical staff. I was told that the doctor had gotten there at about one in the morning; he had looked at the leg and finally decided to remove the line. However Nathan was going to lose his foot, it had died and would now fall off. Fear and nausea rushed over me. I found their clinical, abrupt attitude unbearable, for the first time in my life I understood how people can be pushed to draw blood from another human being.’
The frustration, the questions and doubts remained. The flow of information was poor with details only given after decisions had been made. ‘I had spent day prior expressing my concerns to staff all the while being told that it was fine even though during the night prior his leg was up in the air, jerking and completely black and blue. As the two doctors updated me and my partner and I began to get upset and asked questions they quickly left, making the final remark that this was the least of our worries, almost to say the child would probably die anyway. I must have stood motionless in that spot for over an hour, staring at my tiny tubed and badly bruised baby.’
Eleanor tries to understand the actions. She has great praise for the nursing staff one of whom approached her later that day ‘She partially apologized for the doctors, not for what they had said but their clinical manner. I think and I’m sure this nurse would agree, that they talk and behave in such a way so as to not get attached, to keep their minds firmly on the job. Yet in all I have experienced over the years, this approach is something I could never get used to. I find it has always been more positively productive when a doctor takes a soft, honest, human approach, a rare thing to find.
Nathan had endured so much and he would have to travel to Dublin for both hernia and heart surgery and had tested positive for M.R.S.A. It is here that some unanswered questions remain in this case. A freedom of information request produced two sets of medical notes from the same time period that do not tally with each other. There are also two versions of the ‘Problem List’, one describing the discolouration of the foot and one making no mention. Eleanor says she was told that sometimes notes are written ‘after the event’ but this alone seems a strange procedure.
Professor Andras Fogarasi, head of neurology in Bethesda Hospital in Budapest, reviewed the case and also felt there were questions to answer. Nathan was treated initially for Chlamydia with no real explanation as to why this was done. After he tested negative for this the medication was stopped. However, the swab test was taken a full 6 days before the result was found and medication stopped.
Prof. Fogarasi was also concerned that amid all Nathan’s problems and fight for survival he tested positive for MRSA. Yet he was not isolated. . Most importantly Eleanor was never informed of the MRSA infection until she found this out through her search for answers. Any such complication should be brought to a parent’s attention immediately according to Prof. Fogarasi.
The role MRSA may have played in this case remains an unanswered question as is the fact that two sets of notes exist with differing information. For Eleanor the search goes on. Years of wading through files produces only tiny steps forward Letters to successive Ministers, to the Taoiseach and appeals to so many to help have been met with red tape, procedural wrangles and years of delay. She has been in her own view denied all manner of rights She has been told to move on and that no more answers can be given. But she can’t, what parent could?