Baby Arianna Wairimu who is battling a rare medical condition in India could be denied lifesaving treatment following the controversy on the transition to the Social Health Authority (SHA).
Arianna survived a July 5 death scare after a successful high risk stem cell transplant only to be diagnosed with Pearson Syndrome (PS), an extremely rare and deadly condition with less than 10 known cases globally.
When Nation.Africa, on October 7, reported the latest finding by doctors at Fortis Memorial Research Institute, amid difficulties to foot bills with the National Hospital Insurance Fund (NHIF), card, Kenyan health officials promised to intervene.
Health Cabinet Secretary Deborah Barasa said her team was working to address the plight of the baby who has been admitted to the hospital in New Delhi for the last six months with her mother, Teresa Ndung’u.
“I have seen Baby Arianna’s predicament. My team and I are still consulting on how to go about it, but we will help her,” Dr Barasa told Nation.Africa at the time.
Mr Ibrahim Alio, the director, corporate services at SHA, also reached out immediately after Ms Barasa.
“Thank you, I have had a long call with her, tutamsaidia,” Mr Alio told Nation.Africa in a text message after contacting Arianna’s mother.
After the baby’s mother furnished him with the requisite documents, including invoices, he replied: “Hi Teresa, this is well noted.”
Then a few days later, a Ms Jemimah, who told Teresa that she works at NHIF, delivered some disappointing news.
“NHIF does not reimburse money because they don’t have a reimbursement policy. The hospital should accept our guarantee of payment (GOP),” the NHIF staffer said.
But Fortis Memorial Research Institute officials told Nation.Africa they had no faith in NHIF. The facility cited huge debts and the transition to SHA that has prompted the deactivation of the NHIF system.
Since the hospital is apprehensive SHA might not honour the claims, it has instead asked the baby’s mother to pay cash.
However, Teresa told Nation.Africa the family had been relying on NHIF after exhausting the Sh6 million Kenyans contributed to her daughter’s medical kitty.
“They have told me that they fear SHIF might not honour NHIF’s liabilities and due to unpaid debts by NHIF, they have refused to accept a guarantee of payment. Instead they have recommended paying in cash,” Teresa said.
“I have exhausted all my savings and now we are honestly stuck. I don’t know what to do,” pleaded the single mother who has been Arianna’s caregiver since arrival at the facility in May.
Mother and baby feel abandoned at a time Arianna’s health condition requires urgent costly treatment.
Doctors have been performing tests after every 30 days and although the bone marrow transplant was successful, PS presents another major headache that has sent medics and researchers at the New Delhi-based facility back to the drawing board.
Arianna had to transferred to the high dependence unit after a serious bout of fever.
“Arianna developed an unusual fever last week and the doctors immediately transferred her to HDU,” Teresa said.
On Wednesday, Nation.Africa followed up on the promises health officials made 10 days ago but got no responses.
Dr Barasa, Mr Alio and SHA chief executive Elijah Wachira, who are conversant with the case, neither answered our calls nor responded to text messages.
However, SHA chairman Dr Ali Mohammed referred us to SHA management.
“I don’t see any issue that needs my intervention, this is a management issue and it seems they are in touch with the facility and the mother. Please follow up with the SHA CEO,” he said.
Nation.Africa also sought out Mr Wachira again but there was no response.
Meanwhile, in Kenya, family, friends and well-wishers are scrambling to raise more funds for baby Arianna.
“Hey team, Baby Arianna needs to undergo some crucial tests urgently and unfortunately they have exhausted what we had contributed and this needs to be done as soon as possible. Approximately Sh150,000 is needed for the tests, we appeal for your help,” Ms Linet Waweru, the treasurer for Arianna’s medical kitty posted on social media this week.
Teresa says she is grateful to Nation Media Group (NMG) for highlighting her baby’s plight and the generosity of Kenyans who she says have been coming through for them in huge numbers.
“Dear Kenyans, I am still being told for the next one month or so we need to pay Sh100,000 on a weekly basis which I do not have, your support can make a significant difference in Arianna’s journey to recovery,” she said.
You can channel your support through:
– Account: 7834867 (Arianna’s Medical Fund)
– Mpesa number: 254720677064 (Teresa Ndung’u – Mother)
Source link : https://nation.africa/kenya/health/health-bosses-break-promise-to-baby-arianna–4796314
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Publish date : 2024-10-17 11:11:38
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