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Mothers of kids born with Trisomy 21 (Down Syndrome) cry before MPs, feel neglected by government and families

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By Anna Chibamu

MOTHERS from Brave Little Hearts Zimbabwe (BLHZ) broke down before parliamentarians last week narrating challenges and hardships they face in trying to have their children access treatment from public hospitals.

BLHZ petitioned Parliament over the plight of children living with heart-diseases in the country.

The organisation’s founder and executive director Tendai Moyo lost her little girl to a heart ailment on January 21, 2018 after an alleged case of negligence by a nursing sister at Mpilo Hospital.

According to Moyo, the baby was born on May 9, 2017 and was diagnosed early.

“My daughter (a high risk baby) died a painful death. Even to this day, I am still disturbed by the negligence from one of the nurses at Mpilo Hospital in Bulawayo. She could have survived if the hospital had a portable oxygen machine. The nurse on duty failed to put back an oxygen pipe to my daughter who could hardly breath on her own. I was then advised to queue for an oxygen tank at a 10 minutes away walk place at the institution.

“My daughter was queuing to be ferried to India for a heart surgery. There are no echo machines in Zimbabwe except for Bulawayo and Harare only through-out the country,” Moyo said.

An ECHO is a machine that analyses heart functionality.

Moyo added that she reported the negligence issue but is not getting any assistance except being referred from an office to office.

“I decided to form BLHZ to help mothers who are going through what I experienced. I want this to come to an end and make sure every child gets medical attention. We are losing many young lives that could be saved if authorities give the recognition deserved by our children. To this day, there is no health strategy regarding this condition and when we ask for help we are asked to have an MOU with the ministry which has taken ages whilst our kids are dying.”

Trisomy 21 is a genetic chromosome 21 disorder causing developmental and intellectual delays and is associated with heart conditions at times. However, the condition cannot be cured though treatment can help.

Addressing members of the Parliamentary Health Portfolio Committee, Moyo said most kids born with trisomy21 were dying due to several challenges that included wrong diagnosis, wrong medication, delays in paperwork for those needing to go overseas for surgeries and lack of support from relatives and spouses.

She told the committee that negligence by public hospital staff was another challenge that led to her child’s death.

“Even at home, we face challenges. Most of the young women at BLHZ have been deserted by their husbands. Kumusha kwedu hakuna zvakadai. Izvi ndezvekumusha kwenyu (there is nothing like this in our family. You brought such genes from your family) Some men can even tell you that kids born with such a condition are demons and they leave you. Men do not understand our psycho-social support needed by mothers.

“We are then forced to take care of the children on our own. In this economic hardship environment, we are failing to help our children and to fund their treatment. It is so painful to see your child deteriorating health-wise and eventually pass on without any assistance,” added Moyo almost in tears as she spoke to NewZimbabwe.com.

She added that the primary care for the children was lacking alleging most of them were being used as learning objects in hospitals.

Another mother, Deloice from Greendale, lost her child to almost similar circumstances.

Mothers spoke of discrimination and stigma from both health and learning institutions and the general communities where they come from.

“We are appealing to the government to help us in this trying time. Hatina kokuchemera,”said DeLoice.