ON FRIDAY, Tribune President Robert Carron announced The Tribune Media Group’s establishment of the Aidan Roger Carron Children’s Foundation to make available to our medical profession the latest information, equipment and whatever is needed to assist them in their fight against paediatric diseases in The Bahamas.
In this article, we will try to answer some of the questions asked and suggestions made by members of the public after reading the tearful description by Aidan’s mother, Elizabeth, in Wednesday’s edition of The Tribune. Elizabeth told of the frightening five months the family lived through with their infant fighting for his life and the continued watch that will have to be kept over him well into the future.
At no time have we inferred that our Bahamian doctors are unqualified. We agree wholeheartedly with the comment “that some of our doctors in the paediatrics unit are top notch”. However, this archipelagic nation is small, and many of our doctors do not have the luxury of going off on refresher courses to keep them up to date or to learn what mysteries foreign doctors are uncovering in their practices. Our Foundation hopes to bring our Bahamian healers closer to the world-wide medical fraternity.
For example,the research on HLH, the disease that almost took Aidan’s life, is relatively new – from 1985 – “and causes as well as symptoms are still being discovered, many cases go undiscovered (or too late) and lead to fatality for the patient. It is important to catch the illness early.” And so, international doctors have only been working seriously on this disease for the past 32 years — not really long enough to come to a final conclusion on the future of any aspects of it.
“The Doctors at Cincinnati Children’s Hospital treat more cases of Hemophagocytic Lymphohistiocytosis (HLH) each year than any other paediatric hospital in the United States,” said the HLH cancer report. “Dr Lisa Filipovich at Cincinnati Children’s is regarded as the world renowned expert on this rare immune disorder.”
It was here that Aidan’s blood samples were sent and tested. Cincinnati determined that he had secondary HLH, which gives him more of a fighting chance than if he had had hereditary HLH. When Aidan was released — after five months of treatment – to return home on Christmas eve – until his next appointment in a month’s time – Dr Maggie Fader of Miami Children’s Hospital wrote:
“He must not be given vaccines until I have cleared him when it is safe. Once cleared to begin the vaccination process, he will do so under our direction as his previous illness occurred immediately following an aggressive vaccination regime.”
Another member of the public asked: “Was the infant sick at the time or had he an underlying illness?” that delayed the vaccination regime. No, Aidan had had no illness from the day he was born, as a matter of fact each time he went for his regular check-ups his paediatrician remarked on what a healthy, alert baby he was.
Another reader was left with the impression after reading the mother’s story that the long delay between the routine injections was the fault of the parents, because it seemed that they wanted the DTap used instead of the DTP vaccination. Nothing could be further from the truth. Neither mother, nor grandmother is a doctor and neither had ever heard of DTap or DTP vaccinations to even have an opinion. However, we were together when the doctor explained to us that although he had a supply of DTP, he did not have DTaP. He would prefer to wait to start the second round of vaccinations for the DTaP supply to arrive in The Bahamas. He did not want to use the DTP, because of a possible adverse reaction. Who were we to disagree? So we waited.
The Tribune published an article that doctors had been unable to obtain the needed DTAP vaccine since the summer of 2015. In no time a small supply of the vaccine arrived. We soon received a call from the doctor’s office to start Aidan’s second set of routine vaccinations.
From that day, his mother worried daily that he had had too many vaccinations all at once. She was reassured by the administering nurse that everything would be all right — they were “just catching up,” said the nurse.
Even at home, Elizabeth’s mother’s instinct told her that something was very wrong with her son. Aidan started to vomit, then he got a slight fever — “oh, he must be teething” she was told. And so it went on - nothing to worry about, she was assured. The day before Aidan was finally admitted to hospital, Elizabeth was in constant touch with the doctor, who thought the infant could wait until morning to be seen. However, late that night his temperature spiked to an unheard of 107 degrees. We rushed him to Doctors Hospital where the action started. A few hours later, he was transferred to the Critical Care Unit of Princess Margaret Hospital.
When mother and son were airlifted to Miami Children’s Hospital, the examining physician said Aidan should have been admitted to hospital on the day his mother was agitating that her baby had taken a turn for the worse— there was no time to wait, but wait they did.
According to many medical experts, a mother’s instincts are a vital part of helping them get the right diagnosis for a child. And this was the belief of the doctor who took over Aidan’s case in Miami. She sat Elizabeth down and asked her to recount her observations of the baby from the day he took sick. Before the results of any tests were back, the doctor had diagnosed HLH. Another doctor had a puzzled waiver – Aidan looked much too healthy to be an HLH victim. However, the following morning 5 out of 8 positive blood tests needed confirmed HLH and treatment started immediately. Weeks later, the results arrived from Cincinnati – not only was it HLH, but it was secondary, also apparently rare for one so young. At that age one would have expected it to have been hereditary - however, the evidence all pointed to an overload of vaccines, no infection, virus, tumors,cancers or genetic markers were detected.
One of the Nassau doctors insisted, before Aidan left Nassau, that a bone marrow test be taken at PMH to determine his disorder. We refused to give permission for this very painful procedure. However, as Aidan was being prepared to be airlifted to Miami, a hospital staff member entered his room, told his mother to leave. Elizabeth protested. The medic – whether a resident doctor or a nurse, we were not certain– said words to the effect that the procedure she was about to perform was not very pleasant. Elizabeth ran out in tears to where Robert and I were talking to another doctor. I rushed back to Aidan. Whoever the medic was she had attempted to take a blood sample - for what we shall never know as he was on his way to Miami. Obviously, with no vein available, she dug down too far in search of a vein, leaving a large blood filled haematoma that took up most of the baby’s forearm. The head of the department was horrified when she came to check Aidan out for the flight. The wound was wrapped, but when the baby arrived at Miami Children’s Hospital, it was then that the music began. There was an investigation, the results of which we were told was sent to the board. We do not know to what board they referred. However, we were told that Aidan could have lost his arm or bled to death.
There are many routes that we could have taken in this case. However, we decided that the only way to make certain that it never happens again to another child is to set up a foundation that will open the doors for our practitioners to benefit from a wider vista on medicine.
It is for this reason that we have decided to make Aidan’s private medical records available to the medical profession.