Double challenge

Gemma Benjamin happily accepted news that she would be giving birth to twin girls.

However, she was sent into a state of shock when she received news there was a high possibility they would be born with a medical condition that would cause them to be disabled.

Toriaya and Tariaya Brathwaite have been encountering several complications, two-and-a-half years after their birth.

The toddlers are unable to speak, walk, or eat solid foods due to a condition called microcephaly which is caused by Zika.

“I was shocked to find out that they would be born with special needs. I asked myself what did I do wrong? What was I eating? Did I work too hard? Was I lifting up something heavy? I kept asking myself what I could have done to make them sick.

“It is not easy on them. It is not easy on me, but we try. They did not ask to be born this way. Sometimes I try not to shed a tear, but when I see them get frustrated because they are trying to do something, the tears just fall,” Benjamin told Barbados TODAY during a recent interview.

It hurts Benjamin that her daughters will never live a normal life.

But while the single mother of five tries her best to ensure that they receive their basic necessities, the fact that she cannot afford to meet all their needs due to a limited budget, is emotionally and mentally taxing.

The girls, who also suffer from cerebral palsy and exhibit the early stages of epilepsy, are also currently in need of urgent medical attention because their condition seems to be getting worse.

“They have to get MRIs, wheelchairs and walkers, and I am still waiting on the doctors to tell me about the next steps. I am trying to get more space for them because right now I live in a one-bedroom house and they don’t have enough space to crawl around and exercise.

“The girls are in need of basic necessities like pampers, wipes, cereals, and normal things that infants may need. But my main focus is getting them the medical attention that they need,” Benjamin said.

“Honestly, it is very rough, especially now that things have gone up even more. You go in the supermarket and see things at one price this week and then when you go in the supermarket next week it gone up to something else.

“I am not able to provide certain things for the girls or for the other children due to financial commitments. The bills gone up and I found myself in a little financial predicament where the bills were not being paid because I have so much to do, especially with the twins who I have to put first because of their needs, she added.”

The Zika is a mosquito borne virus, which causes birth defects in babies born to some infected pregnant women. With microcephaly, babies are born with underdeveloped heads and brain damage.

Benjamin said she could not remember being bitten by a mosquito when she was pregnant. In fact, she said she had a healthy normal pregnancy, and cannot recall ever having any of the symptoms associated with Zika.

However, the 35-year-old recalled that when she attended her 29-week check up, the doctor told her that the babies heads were unusually small, and ordered her to have a blood test.

“While now the older of the two who is Toriaya, she does not walk, she does not talk. She holds on in the playpen and make her steps but to actually get here on the ground is a bit of a challenge for her.

“She can sit up on her own but she can’t feed herself on her own as yet. Whereas Tariaya is at the stage of a six-month-old baby. For Tariaya everything has to be liquidized.

“One of them has mini seizures in her sleep so I have to be up monitoring her to make sure that everything is okay. It is bit taxing but it is all the work of a mother.”

The girls receive therapy at the Children Development Centre where they also attend day care. Benjamin said the twin’s godfather assists her a great deal with getting them to and from day care and appointments.

But though most of the work falls on her shoulders, the mother said she does not regret having her daughters. She sees them as a blessing.

In fact, the quality insurance specialist said she believes the previous job she held, was God’s way of preparing her for what was to come her way.

“Before I was pregnant with the kids I was working at a school with special needs children and I was always wondering how do the parents manage and cope with a child that has multiple special needs. I never thought that it would happen to me. That job opened my eyes to a lot of things in terms of how to deal with them and how to treat them.”

On Sunday, veteran entertainer Richard Stoute partnered with the Barbados Museum & Historical Society to stage a fundraising concert to help with the twin’s financial needs. Although the concert was free, Stoute appealed to patrons to donate cash.

Benjamin who welcomed the fundraising concert which took place at the Museum on the Garrison, St Michael, said while she appreciated the much needed funds, she was especially pleased that she was able to educate members of the public about what it meant to suffer from microcephaly.

“Microcephaly is not something that can be cured with an injection or like how you would get a cold and you go and get histal and cure it. It is something that you have to live with for the rest of their life.

“They have to go through MRI scans, doctors’ appointments and a whole set of things to make sure that they can function in some way,” Benjamin explained.

The mother said though she and her daughters face many challenges, her days are always made better whenever she sees a smile appear on their faces.

anestahenry@barbadostoday.bb