Not giving up on my child - Mother fights for daughter born with rare disorder

Parents should never give up on their children, no matter how they are born.

That is the message 24-year-old mother Britania Fyffe is sending as she continues to fight for her baby girl Dejah Henry, who was born with Edwards syndrome and dextrocardia, conditions that have made her journey especially challenging from day one. Edwards syndrome is a rare genetic disorder that affects a baby's development, while dextrocardia is the positioning of the heart on the right side of the chest instead of the left.

Only about 10 per cent of babies born with Edwards syndrome make it to one year old - but Dejah is in that group.

"God bring this child too far fi me give up pon har and mi ago fight wid har until him ready fi har," she said. She explained that throughout her pregnancy, nothing seemed out of the ordinary, even up to 33 weeks. But the night she went into labour told a different story.

"Mi go sleep Friday night and about 12 o'clock mi feel the pain. Mi lay down and mi couldn't move, like something hold me down," she said. She was taken to hospital where she tried to remain calm, hoping for the best care.

"When we reach 10 centimetres, dem say a long time mi deh there and mi never cry. By the time the nurse come it was too late, the baby head ready fi come out," she said. After giving birth, Fyffe quickly realised something was wrong.

"Mi notice seh she start breathe fast, so mi say 'Nurse, the baby not breathing properly'," she recalled. While being treated, she overheard a comment that shook her.

"Mi hear a nurse say, 'See the baby in there so, that deh baby deh cyan fix', and mi just start break down because mi know a fi mi baby," she said. Doctors later confirmed the diagnoses. Among the physical symptoms of Edwards syndrome, is irregular shape of the baby's head, which was evident with Dejah. Despite the diagnosis, Fyffe said she turned to faith and refused to accept defeat.

"When mi go inna the unit and see mi baby string up and dem say dem not seeing movement waist go down, mi never say nothing. Mi just go outside, tek off mi gown and get the olive oil weh mi did have. Mi consecrate the olive oil and the Spirit tell me fi rub har, so mi go back and rub har. The next day dem say is a movement from waist go down," she said.

Though the road has been difficult, Fyffe said that she has not been entirely alone. She said Dejah's father provides support and she also leans heavily on her family members.

"Mi appreciate the help weh mi get because it really take a village," she said.

Still, the financial strain is real. The money she receives weekly to care of Dejah and her four-year-old sister is quickly exhausted.

"By the time mi buy lunch money fi mi next daughter, snacks, Pampers, food and pay taxi fare fi hospital visits, the money done," she explained. Dejah's medical needs also continue to grow.

"Dem want me do a KUB (kidney, ureter and bladder X-ray) and that alone cost $8,000, and more tests deh pon the list. Right now a her kidney giving trouble," she said. Dejah has to attend constant appointments because she keeps getting infections due to her fragile state. With the need for 24/7 care, Fyffe is unable to take on steady employment.

"No normal job nah go keep me because any time mi get a call, mi affi drop everything and go. Every time I try working that is what happens but I will continue to try. I don't see no other way."

Even so, Fyffe has found strength in her experience and now uses it to uplift others.

"Mi see other young mothers online going through similar things and dem reach out to me. Mi encourage dem and give dem advice," she said. "Mi tell dem 'Don't give up pon unnu child because every special child deh yah fi a purpose'."

Fyffe admitted that she used to cry about Dejah's conditions, lamenting that she cannot run and play with her sister.

"But mi affi accept seh she ago do things slow and mi haffi go care for her for the rest of her life," she said.

"The doctors did mek me meet one other mother who have a baby with the same condition. If I can remember good, they said a only the two of us have babies with that condition. Mi nah go give up pon har."

Persons wishing to assist Britania Fyffe care for her daughter Dejah Henry, may contact her at +1 (876) 453-0552.