It’s been just over four years since T&T first learned about the Zika virus. While the country has seemingly moved on life for families with babies affected in the womb by this life-altering virus has changed dramatically.
For the first time since Health Minister Terrence Deyalsingh disclosed on October 31, 2016, that the country had recorded its first microcephaly birth as a result of the Zika virus, T&T will now have its first glimpse into how some of these affected parents and their youngsters are surviving.
Amanda lovingly cradled her daughter Gabriella as she admitted: “At the beginning, it was very scary because we didn’t expect anything like this because I wasn’t aware I had the virus when I was pregnant.”
The 28-year-old mother of one from Morvant recalled: “It was only in the late stages of the pregnancy, from around 33 weeks onwards, they realised that something was wrong with the ultrasound and from that, it was just worries after worries . . . especially when we kept getting told by the doctors that she wouldn’t do this, she wouldn’t do that.”
Comforted by the fact that her 31-month-old daughter continues to defy the odds stacked against her even before she entered this world, Amanda insisted: “It has been a learning experience for all of us because she is doing very good. We are trying everything people are advising us to do. We always carry her to therapy and do as suggested, and we are just waiting to see how she progresses.”
Although Gabriella has fallen short of achieving certain milestones just yet, Amanda explained: “She is not sitting up, walking or talking like a usual two-year-old but she has done a lot of improvement since birth.
“She is holding up her head . . . she’s trying to balance more and trying to use her hands a lot more but just at her own pace.”
Gabriella’s father, who did not want to be identified, said: “When she was six months, they said she might not make it to a year. They said she could stop breathing at any time and it is hard for a first-time parent, not knowing if she will see five years.”
Amanda wants her daughter to have as normal a life as possible. Gabriella is attending a daycare where she can interact with other children her age.
“It is hard when you see other children around her age doing certain stuff and she isn’t. Yes, we feel down,” she admitted.
The experience has strengthened her relationship with Gabriella’s father, Amanda said.
“We have had to lean on each other more. Sometimes he might break down and I have to remain strong for all of us. But sometimes again, I will break down and he will be the strong one for me. We are always helping each other along the way.”
Amanda refuses to blame God or the authorities for her daughter’s condition. She said through therapy the quality of Gabriella’s life has vastly improved and they are now encouraging her to crawl, sit up and stand up.
She breathlessly revealed: “My dream is for her to walk and talk, call my name and her dad’s . . . things like that.”
There has been overwhelming acceptance of her daughter by their respective families and the wider community.
“Everybody accepts her. All the children will come and laugh with her, play with her. They have accepted her like a normal child,” she said.
Amanda has been denied government assistance to care for her daughter. She was told her government job came with a salary that crossed the $5,000 cap but she estimates that her daughter’s medical expenses are perhaps triple times that for a regular child. She said in addition to the required medication, she also has to pay for therapy and specialist care for Gabriella. This is in addition to the family’s other expenses such as their mortgage, car loan, utilities, and other household necessities.
A similar experience was shared by Shannoah and Jhlani, whose daughter Jhamara was affected by the virus in utero.
Smiling as she looked on at Jhlani’s antics to keep their 31-month-old daughter laughing, Shannoah said: “It was hard at first because I did not know until she came out. I didn’t know before the birth and I wasn’t eating after because I was so worried.
“I had to leave her in the hospital and I kept studying she was alone. After the doctor told me I had to breastfeed her before she could be discharged, I did and that was how she was able to come home with us.”
The 22-year-old Diego Martin mother of two—she also has a four-year-old son—added: “I don’t treat her any different from other children. I only feel she is different when other children who are younger than her come around and they are doing more than her. Then I feel hurt but I try not to take it on because she is still my princess.”
Asked to explain how her children interact, Shannoah replied: “If you see how he deals with her, you would never believe she is different. He would come and tell me Jhamara said she wants to go to the park but she can’t speak. He understands her and she is his comfort. He needs her to sleep, they have a special kind of bond.”
Jhlani added: “He has to play with
her hair to fall asleep and when he is around, he is most excited.”
Shannoah further explained: “He doesn’t treat her any kind of way and their cousins have also accepted her the way she is and everybody just loves her. I pray that one day I will wake up and she is walking and talking.”
Shannoah said she and Amanda are looking for pre-school places for their daughters.
Their families have been towers of strength and support for them, Jhlani said.
“At first, it was kind of uncomfortable, not knowing what exactly to expect but we tried to take things as they came along,” he said. “I love her the same way. I don’t feel no way about her. Anything I have to do to organize her, I try my best to make sure she has what she needs.”
Amanda and Shannoah said what has been most difficult is not knowing exactly what is wrong whenever their daughters are crying.
Shannoah said: “We try to comfort them but sometimes it is frustrating because you don’t know and they can’t speak.”
On the question of having more children, Amanda said she and her partner want to wait until Gabriella is a little more independent.
Shannoah said: “I told Jhlani we have to make another daughter to take care of her because I know she cannot take care of herself.”
A Muslim couple who asked not to be identified said the experience has led them to home-school their four-year-old son to get more time with their baby girl who has been diagnosed with cerebral palsy and global development delay.
The wife revealed: “Initially, I did not even know for sure that I had the virus. I just had a rash and the doctor told me not to worry too much because a lot of ladies were coming in with that rash, so I did just that, I didn’t worry. Even though I knew the Zika could affect the baby, I couldn’t stress myself out and we also knew we couldn’t do anything about it or the outcome. We just had to wait and see.”
“She was normal in all of her ultrasounds so we had no idea anything was amiss. At around 36 weeks she stopped growing and my fluid was dropping a lot. We delivered at 37 weeks and that was when we found out she had a smaller head.”
She said the family just did what they had to do.
“Definitely we can’t give her the same attention you would with a normal child...we haven’t been able to do a lot go things like we did before,” she said.
Her husband added: “A lot of it revolves around her. Things like having a meal out . . . we have to consider if she can handle it and if she will be out too late. We took a decision to homeschool our son because it would allow us to give her more attention.”
On her daughter’s long-term prognosis, the mother explained: “She can’t roll over, sit up or use her hands for anything yet. She can’t sit up by herself or speak. Other than that, she does not have any major health issues except for reflux but we are doing what we can to be as self-sufficient as possible. She is coming along and she’s doing a lot more than she was a year ago.”
“Our son is good with her, the normal sibling rivalry but he loves her. He tries to stretch her arms like they do in therapy.”
The couple credited their commitment to the Muslim faith as one of their biggest support systems as everyone has been good to them and their daughter.
The Zika Foundation TT
On July 31, 2016, it was announced that more than 200 cases of the Zika virus had been recorded in T&T, of which 60 had been diagnosed in pregnant women. To date, there remains a cloud of mystery around the issue which is currently before the court. However, conservative estimates say that number could exceed more than 100.
Medical Chief of Staff, Mt. Hope Women’s Hospital, Dr Karen Sohan, was appointed by the Ministry of Health to head an antenatal screening programme back then and was challenged to develop specific processes and procedures to respond to the diagnosis of the Zika virus in patients, with special attention being paid to pregnant women and developing foetuses.
Dr Sohan was able to convince a small group of altruistic individuals like herself to establish a non-profit organization with the sole aim of supporting families affected by the Zika virus.
At the formal launch last Saturday at the Kelly Hall, Presentation College, Chaguanas, Sohan said: “When it became apparent that the Zika virus had targeted our most loved babies in the womb, we experienced a tremendous pathology that had never been seen or felt before.”
A national health emergency was declared in January 2016.
“We had the nation’s mothers being anxious, being worried, being sad,” she recalled.
However, she added: “Out of that natural disaster, there was an extraordinary group of people whose families were affected and those are the ones we will be focusing as we move forward now. From today forward, you are not alone. We have been inspired by your courage, dedication, determination and love for these special children.”
Dr Sohan said the wider public is unaware of the needs of these families and children and appealed to the media to partner with them to highlight their experiences.
Anyone willing to help can call 375-6307, or email the zikafoundationtt@gmail.com.
Health Ministry silent on Zika babies
When the Sunday Guardian contacted Health Minister Terrence Deyalsingh, he declined to comment.
“These matters are now in court so I will not comment,” he said.