Three months shy of his third birthday baby Davyn Ragoo has spent a considerable portion of his life at hospital wards, hooked up to tubes and poked with needles.
Little Davyn was diagnosed with microcephaly, a medical condition associated with the dreaded Zika virus.
He is one of many babies affected by the virus in T&T and cannot get the type of care in this country.
His parents are trying to raise US$25,000 to take him abroad for further diagnostic testing and evaluation. They plan to travel to Miami in December and are hoping they meet the target before their departure.
Kavita Ragoo, a petite mother of three, stands as a tower of strength in her family as she juggles her corporate job and family duties daily.
Her husband, Kevin, is her rock of support to help the family get through what has been an extraordinary journey.
With the help of occupational therapist Kimberly Salloum and the Zika Foundation of T&T they have set up a GoFundMe account Help Save Davyn’s Life and have raised just over US$12,000, just under half of the target. Two fund-raisers, a barbecue and curry-cue, are expected to push the tally forward.
The young couple has borrowed more than they could ever repay, emptied their savings and almost got evicted from their home as they negotiated to pay a reduced mortgage. All their efforts to get medical insurance for baby Davyn have been turned down.
The only financial assistance from the State comes in the form of a public assistance grant which has been twice disrupted after Kavita began working.
She received the last cheque of $1,350 in the form a Special Child Grant last month and “it looks like it stopped again.”
She said social welfare officers told her that the grant was not an entitlement and would be stopped if she was employed.
Kavita’s second baby, a girl, was only three months old when she found out she was pregnant for the third time. She was excited and went to her doctor who had delivered her two other children—Devin, aged six and three-year-old Divya Marie.
News of the Zika virus reaching our shores had only months before hitting the headlines and among those most at risk were pregnant women.
“At six weeks I noticed a rash on my right arm but it went away,” Kavita said. She said her doctor assured her that everything was normal after an ultrasound in October 2016.
Three months later the doctor came with the shocking news that she could not get the measurement of the baby’s head.
On February 3, baby Davyn was delivered weighing five pounds, 13 ounces.
His head was smaller than usual.
“We immediately became concerned that he might have been affected by Zika,” Kevin said.
Dr Karen Sohan, who was then the Medical Chief of Staff at the Women’s Hospital, at Mt Hope, ordered another ultrasound to the baby’s head which showed that the surface of the brain was smooth and not indented. The shape of baby Davyn’s head resembled an hour-glass. The circumference measured just 27 centimetres.
Today, baby Davyn remains on a strict regimen of antibiotics, he experiences extremely high fevers, which triggers bouts of seizures.
His parents hope doctors at Nicklaus Children’s Hospital, in Miami, can figure out what is causing the fevers and whether his internal bleeding caused by a feeding tube did any further damage internally.
With every meal, baby Davyn must take medication, a laxative is just one of them.
“In between all of this were prayers and more prayers. Through prayers we saw answers,” Kavita admits.
“All we want to do is give him the best opportunity. We understand he will not progress as a normal child. If from his treatment abroad there is progress, it will help the other children who are part of the Zika Foundation of Trinidad and Tobago,” she added.
Baby Davyn cannot roll, creep or sit up. Doctors are not sure if he can see and his parents have learnt how to communicate with him by the way he stretches, curls up and even when he becomes agitated.
Kavita singled out Dr Sohan, the chair of the recently launched Zika Foundation, for her tireless support and guidance and says she will remain “eternally grateful to everyone who supported us.”
“We feel we are indebted to everyone who helped us. I always think that there is someone who is going through worst than us and we try to support them whenever we get an opportunity to do so.”
Kavita said even though doctors keep telling them that they should not expect anything which would increase Davyn’s life expectancy “we have to keep trying.”
“When people ask them how they manage to care for baby Davyn and go to the hospital so regularly, we say we prefer to sleep on the chairs and suffer than him to suffer. We know it’s a sacrifice for him to get the treatment he needs,” Kavita said.