Baby Arianna Wairimu dies, SHIF pays only Sh23,600 of Sh1.6m medical bill
Baby Arianna Wairimu.
Baby Arianna Wairimu, the one-year-and seven-month-old girl who bravely battled a rare genetic disorder has died, leaving her family with a Sh1.6 million hospital bill.
Despite Ms Teresa Wairimu, Arianna’s mother, consistently contributing to the now-defunct National Hospital Insurance Fund (NHIF) for the past 10 years, the Social Health Authority (SHA) has only wired Sh23,600 towards the bill.
Baby Arianna survived a major health scare last year when she was diagnosed with Pearson Syndrome (PS), a rare DNA disorder with fewer than 10 known cases globally. Her death comes as a blow to her family, who believed she had turned a corner after discharge from a lengthy hospital stay in India.
At one point, Medical Services Principal Secretary Harry Kimtai had assured Nation.Africa that he had personally directed his team to settle a Sh500,000 claim, as outlined in SHIF’s overseas package. This claim was tied to Arianna’s 2024 admission at Fortis Memorial Hospital in New Delhi, India.
However, despite these promises, only a fraction of the expected amount has been paid, leaving the family overwhelmed by a huge financial burden.
Months later, officials at Fortis Hospital now say they have not received the money. Instead, the hospital says it has a guarantee of payment (GOP) that is yet to be acted upon by SHA.
“It's with profound sorrow as a family, that we share the heartbreaking news of the passing of our baby- Arianna Wairimu. At just 1 year and 7 months old, Arianna bravely underwent a successful bone marrow transplant last year and upon return to the country would on February 14, 2025, be admitted at Gertrude’s Children’s Hospital for a procedure after which she was discharged the following day,” Teresa Ndung’u, Arianna’s mother told Nation.Africa on Monday.
“However, on Sunday, her condition took a sudden turn for the worse, and she was rushed back to the hospital, where she was readmitted. Despite the tireless efforts of the medical team and numerous tests conducted, she was diagnosed with Rotavirus,” she said.
“The doctors managed her symptoms with utmost care, but the battle proved too great. On Sunday, February 23, 2025, at exactly 1pm, Baby Arianna took her last breath.”
Successful procedure
But how did Baby Arianna get here after a successful procedure in India?
In November 2024, Dr Vikas Dua, the lead doctor handling Arianna's case disclosed that some tests for graft versus host disease (GVHD) had turned out positive.
GVHD occurs when transplanted donor cells recognise the recipient's tissues as foreign and attack them, leading to a range of symptoms affecting the skin, he explained.
The doctor would immediately put Baby Arianna on oral medication which new tests now show has worked.
“The GVHD was not severe and in fact, she at first had completely lost appetite and was losing weight which was accompanied by bouts of fever but now it is gone and Arianna is feeding well,” Baby Arianna’s mother told Nation.Africa.
“Dr Vikas is releasing us because the baby is clinically okay. He has seen us struggle to raise money for post-engraftment test checks done in outpatient which we paid out of pocket last Friday because SHIF has refused to honour their GOP,” she said.
The test checks show how much of the donor cells are working in the patient’s body versus her cells and have been done thrice before after 30, 60 and 90 days.
According to Dr Vikas, the test checks found that the donor cells were working at 99.87 per cent which was very good.
The expert added that the haplo-identical bone marrow transplant performed on Baby Arianna is the first of its kind performed in India.
A haploidentical transplant uses healthy blood-forming cells from a half-matched donor to replace the patient’s unhealthy ones. This means that the donor is a family member.
To find the best donor match, your doctor will test your blood to find out your human leukocyte antigen (HLA) type. HLA is a protein—or marker—found on most cells in your body.
“Unfortunately, Baby Arianna, who had no immunity and was supposed to start being vaccinated afresh a year after the transplant recently contracted a rotavirus infection,” Ms Ndungu revealed on Monday.
Dr Vikas explained that the prevalence of PS is approximately one in a million, with only 150 such cases mentioned in medical literature.
Chemotherapy regimen
“They performed a stem cell transplant with a thoroughly planned chemotherapy regimen, the patient was discharged in a stable condition within 21 days and has been under regular weekly out-patient department (OPD) follow-ups while in India since the very complex procedure.
This is the first such case treated in India of half-matched donor and seventh bone marrow transplant, as reported in medical literature for treatment of Pearson Syndrome,” he said recently.
Teresa Ndung’u with her daughter Arianna Wairimu. Baby Arianna successfully underwent a bone marrow transplant at a hospital in India.
He announced that Baby Arianna was going to be part of a global study the Indian government and partners will soon be embarking on whose findings they hope will help other patients around the world.
Apart from taking part in the study, Baby Arianna had also been named a Pearson Syndrome ambassador for Fortis Hospital that treated her.
“This is India’s first successfully treated case of Pearson Syndrome.
It is a rare genetic condition which has low survival rates. Children born with the syndrome usually do not survive beyond their first year,” he told Nation.Africa.
Fortis Hospital
In November last year, doctors in India told Nation.Africa that Baby Arianna was due for discharge but would not be allowed to leave the Asian country after in an official email SHA issued a 'bouncing' guarantee of payment (GOP) to Fortis Hospital while assuring that it would settle all debts it owes the health facility including the Sh500,000 Baby Arianna was entitled to.
Health PS Kimtai then confirmed that SHIF had in July 2024 issued a guarantee of payment.
Earlier in October 2024, PS Kimtai said he had personally instructed health officials assigned to the case to immediately pay the money after the GOP issued to Fortis Memorial was declined because the now-defunct NHIF owes the facility millions of shillings it has never settled.
Ms Wairimu who was then stranded in India with her sick child would have no option but to turn to donors and well-wishers.
”I have tried to engage Mr Ibrahim Alio from SHA who reached out to us after Nation Media Group highlighted our predicament but he has since ghosted us and gone mute despite promising last month that they would deposit the money.
I have also sent follow-up emails to Ms Jemimah from SHIF who reached out as well but a month later she has not responded," Ms Wairimu said.
She also recounted empty promises from health bosses.
“There is indeed no policy to refund individuals but we have always been paying the hospital and then they refund those who have spent their money for treatment.
“We have discussed this, we will pay the hospital in your case while you are there so that they sort,” Ibrahim Alio, the director of corporate services at SHA had assured her a month before going silent.
“SHA promised to refund all patients who had spent out of pocket and so I sent all my receipts to Mr Alio hoping that they would reimburse me so that I could use the money to buy food and pay rent because as we speak Arianna’s medical kitty only has Sh1113.
He is still yet to respond to the refund as well.”
“We are dedicated to sorting out all pending claims and have teams streamlining all overseas claims per our packages,” SHA chairperson Dr Abdi Mohamed said when Nation.Africa sought his comment on the matter.
“As we mourn this precious soul, we are also faced with the burden of a huge outstanding medical bill.
We humbly appeal for your support in clearing her medical bills and giving Arianna a dignified send-off, our hearts are heavy with grief as we bid farewell to this little angel,” Ms Wairimu with Kenyans.
llidigu@ke.nationmedia.com
