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Ugandans Fight for the Right to Access Their Own Medical Records

Michael Mubangizi (l) and his wife Jennifer Musimenta (r) with their daughter Babirye. They do not know what happened to Babirye’s twin whose body disappeared after Musimenta gave birth in Uganda’s national referral hospital. Credit: Amy Fallon/IPS

Michael Mubangizi (l) and his wife Jennifer Musimenta (r) with their daughter Babirye. They do not know what happened to Babirye’s twin whose body disappeared after Musimenta gave birth in Uganda’s national referral hospital. Credit: Amy Fallon/IPS

KAMPALA, Mar 27 2014 (IPS) - Dressed in a white dress with black polka dots and pink and red carnations, white knee-high socks and matching patent shoes, Babirye recently celebrated her second birthday. 

“She’s doing well, eating well,” Jennifer Musimenta told IPS in Uganda’s local Luganda language as her husband, Michael Mubangizi, acted as a translator. 

It is an unwritten policy in Ugandan health facilities that patients were never given access to their own medical records.

“But I’m always thinking about the second child, whether she’s alive or not alive, because I don’t know the truth. I’m always worried.”

The child she’s referring to is Babirye’s sister. In Luganda, Babirye means the first-born of female twins.

Twins are seen as a special blessing among Ugandan families. Mubangizi had a set on his father’s side before his wife gave birth to two girls on Mar. 14, 2012, at Mulago Hospital.

The couple did not know they were expecting twins until Musimenta delivered at Mulago, which is Uganda’s national referral hospital and the country’s largest health facility based in the capital, Kampala.

But within minutes of Musimenta giving birth to the second child, whom they named Nakato, which means second female twin in Luganda, they were told she had died.

The pair were then denied access to their baby’s body. Despite pleading for her own medical records, Musimenta was refused a copy of these too.

“We looked for that dead body for three days,” Mubangizi, who immediately reported the case to the police, told IPS.

“We checked in the mortuary, in the maternity ward, everywhere in the hospital. There was no dead child,” the 30-year-old mechanic said.

Three long days later, the couple were handed the body of a dead baby.

“It was very fresh, as if it had been delivered at that moment,” said Mubangizi. “We said that is not our baby.”

A DNA test, which the desperate pair resorted to, revealed the child was not theirs. And now they don’t know for sure if their daughter is alive or dead.

Nakibuuka Noor Musisi, the programme manager for strategic litigation at advocacy group Centre for Health, Human Rights and Development (CEHURD), said that cases of missing and stolen babies were shockingly all too common in Ugandan hospitals.

“There’s so many cases of mothers who have gone to hospitals [to give birth], especially this particular hospital, and their babies are not given to them,” she told IPS.

“These cases are just reported by the media but their parents don’t take them up [with the courts] because maybe they don’t know where to go.”

She added that it was an unwritten policy in health facilities that patients were never given access to their own medical records in this East African nation.

Grieving, and seeking the truth about their daughter, Mubangizi and  Musimenta, with backing from CEHURD, sued the executive director of Mulago Hospital and the Ugandan attorney general in July 2013.

“When we were faced with this particular case we were forced to go to court to show that actually this is a problem that is happening in the country,” Musisi explained.

The couple argued their constitutional rights had been violated through being denied the access to their medical records, the opportunity to nurture and bring up their child and in the hospital taking her away without permission.

All of this has been coupled with the daily mental anguish and agony they have endured, and are continuing to endure, through not having access to her or her body.

On Wednesday, Mar. 26 the High Court of Uganda ordered Mulago Hospital to furnish the couple with outstanding medical documents, a registry of children delivered on the same day as Babirye and her sister, a list of health workers then on duty and a copy of the DNA test.

Musisi said the ruling set a significant precedent for the rights of Ugandan patients to access their medical records.

“The constitution says that everyone shall have the right to access information, which is in the hands of the state as long as it does not put the state or the security of the state at risk,” she said.

Wednesday’s ruling also has implications for Uganda’s stunningly high maternal morality rate – 438 deaths per 100,000 live births, one of the world’s highest.

“Imagine if you’re a mother who has had a caesarean section and no [medical record] is given to you. As soon as you’re discharged from the hospital, you get home and probably you have a [complication],” said Musisi, speaking at the high court.

“That would mean that you have to go back to that particular health facility. What happens if the facility is very far from your home? These are the reasons we see mothers die.”

The case puts the spotlight on the reason why so many Ugandan women are terrified to give birth in hospitals.

“I won’t go back to deliver in that hospital because what happened two years ago could happen again,” said Musimenta.

Mulago Hospital, however, has showed interest in an out of court settlement with Musimenta and Mubangizi. Mulago’s legal team declined to comment.

But what Musimenta and Mubangizi ultimately want is the truth about their daughter.

“I’m always thinking about what happened to her. I don’t know whether she was kidnapped,” said Mubangizi.

“There are some people overseas who can’t conceive and they give money to the nurses [to buy the babies].”

According to local reports babies are allegedly stolen from hospitals but there are also claims that some health workers have been mixing up babies, with parents been given the wrong newborns or dead bodies.

The couple say they’ll use the settlement from the hospital towards getting closure. They are unable to afford the services of an investigator to probe the details of their missing child.

“When someone has twins it’s an honorary thing in our tradition, we do dancing and singing to welcome the twins,” said Mubangizi.

“So we’ll go to our village and have a traditional ceremony. If the baby is alive, she will reveal herself.”

 
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