Baby with mystery illness

How does a mother deal with this, just watching her child cry in pain and discomfort and not knowing what to do? This was Rowtie Singh’s dilemma.

After 15 years of marriage and three children, Singh got an unexpected surprise of her life. She was pregnant with her fourth child. Her eldest son was 20 and her daughters were 18 and 15 years old.

Vakratunda Suryaa Singh was born November 27, 2008 and although he had neonatal jaundice and required two days phototherapy, all seemed well when Singh and her husband, Bhola, took their baby to their home at Goolie Street, Pasea Road in Tunapuna.

Singh took her son for his check up and first phase of immunisation including polio, after which she noticed he became ill and irritable and began refusing to take his bottle.

“I noticed when he got his check ups they never really examined his ears or mouth and so on I decided to do it for myself. On February 23 last year, when I looked inside his mouth, at the back on the roof of his mouth he had what looked like two “bursts”, red spots on the roof of his mouth,” Singh explained.

At first the mother thought it was thrush, a common occurrence in babies, but the spots began to get larger. Other symptoms such as rash on the baby’s hands, shoulders and face began to appear before the onset of a bad ulcer (in the mouth), irritable bowel, high fevers, large round swellings and bursts of the insides of the cheeks and pin hole-sized red spots on the tongue.

Vakratunda has undergone many tests, including those for cancer, but doctors here in Trinidad and Tobago, the United States and England have been unable to make a diagnosis.

However from the results of blood tests, it was discovered that he has a low neutrophil count (neutropenia) and his body was not producing sufficient antibodies (hypogammaglobulinemia), which made him susceptible to infections, viruses and diseases. Singh said her son, who was now 15 months old, was put on a regime of medication including anti-viral which partially suppressed the symptoms, antibiotics and steroids which they were trying to wean him off.

She said when the ulcers flared up the baby experienced extreme pain and was then unable to eat or drink. He was hospitalised for two weeks at the Eric Williams Medical Sciences Complex where he had to be fed intravenously.

Vakratunda cannot be fully immunised as he became very ill after the vaccinations, Singh explained.

“The doctors have said that they cannot give him ‘live’ vaccines such as polio because it contains some of the living virus and that could kill him. He can get tetanus, though. Without being fully immunised Suryaa is wide open for any disease,” Singh explained. Deokie Maharaj, Vakratunda’s grandmother, who visited the Newsday with Bhola, could not contain her emotions nor her tears as she pleaded for help for her grandson.

“He has his good days and he has his bad days. When he is well he would jump up and down in his crib or run around the room. He is a happy, sweet child and most of the time you can’t tell if he’s sick.Then there are times when the pain is so bad he is irritable and cranky and won’t eat. “His mother would have to clap her hands and say ‘ho, ho, ho’ and he would do the same and she would drop some milk in his mouth with a syringe so he could eat. If he eats too much salt he would throw up. We don’t know what to do again, they went to so many doctors,” Maharaj said as tears filled her eyes.

While Vakratunda was both bottle and breast fed, Singh changed his milk to a soy brand to determine if the milk was a factor in her son’s condition, but to no avail. The mother uses only bottled water which she boils and sterilises before using it to feed and bathe her son, and he is kept away from crowds.

However, Singh said she tried her best to give her son as normal a life as possible.

“I don’t want him to feel left out because he feels all the extra care, the feeding with the syringe...all of this is normal for him. I do take him into crowds and for people who don’t know how ill he is, they may think I’m fussing too much,” but on the rare occasion he is exposed, “I keep his face turned away from crowds because you people always want to play with babies,” she said.

For the past 12 months, Vakratunda has been referred to paediatricians, dermatologists and mucous membranes specialists, oral disease specialists and dental surgeons, ears, nose and throat specialists, oncologists, haematologists and immune specialists, but no answers were forthcoming.

It was decided by local medics that the baby’s parents should seek assistance from abroad as he was “a rare and investigative case” and, as his was the first case they had come across, tests to diagnose and treat him were not available in TT. Singh said doctors at Great Ormond Street Hospital in England have agreed to see their son, but they needed a down payment of 20,000 pounds which secured a five-day stay at the hospital. However, it did not include treatment or other procedures, the review of slides from both biopsies done in Trinidad or blood taken before and after partial immunisation, tests which have cost tens of thousands of dollars.

“The doctors here have told me that they have done everything possible to help my baby and in the event of an emergency the only thing they could do is to continue with the medications, ward him and monitor him.”

Anyone wishing to assist baby Vakratunda Singh could make a donation at the Republic Bank in account number 250020929001.