A HA-LEQELE, Maseru family has accused the government and Queen ‘Mamohato Memorial Hospital (QMMH) authorities of denying their six-year-old daughter an opportunity to go for crucial surgery to remove a brain tumor in Cape Town.
The child, Lerato Moshoeshoe*, was diagnosed with a brain tumor shortly after birth at QMMH.
Two years ago, specialists in Bloemfontein attended to Lerato and referred her to the Red Cross Children’s Hospital in Cape Town for surgery. They said the child’s life was under threat and the only thing that could save her was surgery at the Cape Town facility.
However, she has still not been operated on. Her parents are accusing the government and QMMH authorities of throwing spanners in the works by refusing to write the necessary referral letter for the minor whose identity has been withheld due to her age.
Narrating her ordeal in a recent interview with the Sunday Express, the Lerato’s mother, Lisebo Moshoeshoe*, said she was born in December 2015 with tuberous sclerosis syndrome – a rare multisystem genetic disease that causes the growth of tumors.
The syndrome causes overgrowth of tissues in different parts of the body. In the case of Lerato, the overgrowth is on the left side of her brain.
“The scans showed that she has a rare condition called tuberous sclerosis,” Ms Moshoeshoe said.
“This is a rare disease that causes growths in the brain and other organs. The condition is not cancerous but it can be fatal if it gets severe. With my daughter, the growths are on the left side of the brain and that is why her right side is very weak. When the tumors are on the left, the right side of the body is the one that is affected.
“We were referred to a Bloemfontein doctor who in turn referred Lerato to Cape Town for surgery after she had started experiencing seizures. The doctor wrote in Lerato’s medical booklet, saying he had failed to control the seizures and that the only option to save her life was a brain surgery by specialists at the Red Cross Children’s Hospital.
“Unfortunately, we hit a rock at QMMH (then run by the Tšepong Consortium on behalf of the government). They told us that their agreement with the government did not allow them to fund the operation in Cape Town,” Ms Moshoeshoe said.
She said one her friends advised them to seek help from Rare Diseases South Africa – a non-profit organisation which is dedicated to excellent health care for people with rare diseases.
She said QMMH would not give them the referral letter even after being assured that the South African organisation would help facilitate Lerato’s admission in Cape Town for the surgery.
Lerato’s father, Lerotholi Moshoeshoe*, also expressed his anger and frustrations at the authorities’ refusal to help them.
“Lerato’s health continues to deteriorate. She is currently on four different medications to reduce frequency of seizures. Ours continues to a struggle due to delaying tactics by the authorities.
“At one-point Tšepong said the referral letter must written by the management at the Bloemfontein hospital that referred Lerato to Cape Town. Out of desperation, we went to the extent of writing to the Director General of Health Services, Nyane Letsie, begging for the referral letter. We even attached copies of Lerato’s medical records but to no avail,” Mr Moshoeshoe said.
The Sunday Express has made several unsuccessful attempts to obtain comment from Dr Letsie. Most of the times, her mobile phone rings unanswered and on the rare occasions it is answered, she says she will be unable to talk because she is in meetings.
This publication has similarly got no joy from the health ministry’s principal secretary, Khothatso Tšooana, who also said he was in a meeting and referred all questions to Dr Letsie.
QMMH Deputy Director General for Clinical Services, Lipontšo Makakole, said they were only allowed to refer patients to hospitals in Bloemfontein, hence they could not refer Lerato to Cape Town.
“You are talking about a patient who has been referred to hospitals that are not approved by the government. There is no way we can wrote referrals to hospitals that are not approved by the government,” Dr Makakole said, adding Lerato’s case had to be addressed by the health ministry itself.
Valuable time wasted.
Valuable time has been wasted. Lerato’s condition has been deteriorating over the past two years that both the Ministry of Health and QMMH have failed to assist the Moshoeshoe family with the much-needed referral letter.
While the family has been shunted from one office to another by the authorities, Lerato’s tumor has been growing bigger.
“The sad thing is that Lerato was a lot better than she is now when we were told to go to Cape Town. She was still a normal child but her condition has worsened since 2020. At times I look at her and think that she is now mentally disturbed.
“She has even developed other diseases. At Bloemfontein, they have also recommended speech therapy which she was attending at Ladybrand Hospital. She has had to stop going for sessions after the therapist moved to Bloemfontein,” Ms Moshoeshoe said.
She was full of praises for her husband who she says has been fully supportive to the extent of preparing different meals for Lerato whenever she refuses to eat what has been placed before her.
“He gives everything when it comes to caring for his daughter. He attends to her more than anyone else. When she refuses to eat, Ntate Moshoeshoe goes out of his way to prepare something else for her.
“If Lerato refuses to eat pap and milk, he will prepare noodles. If she still refuses, he will prepare spaghetti and try everything until she agrees to eat. He even has time to sit down with her and our son to watch cartoons. He now knows all the cartoons now,” Ms Moshoeshoe said.
Mr Moshoeshoe said it was important for the family to stick together in such trying times and he was prepared to do anything to assists his wife and daughter.
“I accompany my wife whenever Lerato has to go for check-up. Sometimes I even go with Lerato on my own.
“Even when my masculine side makes me feel otherwise, I fight the feeling and remind myself that we are in this together as a family,” Mr Moshoeshoe said.
Lerato could die
But all the maternal and paternal love will not suffice. It is no substitute for the medical attention that Lerato needs.
With a shaky voice and tears streaming down her cheeks, Ms Moshoeshoe fears that Lerato will soon die if she does not get the life-saving brain surgery as per the medical advice of the Bloemfontein specialists.
“Last year we were told that with every seizure, there is some brain damage that occurs. I get mad knowing that my daughter has been denied a simple referral letter that would enable her to have the surgery she deserves. What has made us angrier is the unsympathetic attitude of a QMMH staffer who said the money required for Lerato’s treatment could be used to help many other children instead of assisting just a single child.
“It would have been better if they had given us the referral letter and left us to struggle on our own afterwards. Things might have been different but as it is, QMMH has failed us by denying us the assistance our baby needs.
“Right now, I’m not coping at all. Every time I hear about epileptic children who have died, I just cry the whole night because I have an epileptic child.
“All we need is for our daughter to be given the referral letter so she can go to Cape Town for surgery. Even her Bloemfontein doctor pitied us, saying ‘if you were South Africans, I would send you to Cape Town right away before this thing becomes cancerous.
“We are appealing to the authorities to urgently help us with the referral letter to Cape Town. We are prepared to take her anywhere for assistance. They can even refer to India and she will go there as long she can get help to enable her to live a normal life,” Ms Moshoeshoe said.
*These are not the family’s real names. Pseudonyms have been used to protect the minor child’s identity.