Baby Arianna lives past July 5 but her life depends on next 90 days
Teresa Ndung'u with her daughter Arianna Wairimu, who urgently needs a bone marrow transplant.
Baby Arianna is regaining her health thanks to a lifesaving surgery that had to be done by July 5, but the next three months are critical in her remarkable recovery journey.
The successful bone marrow transplant at Fortis Memorial Research Institute in India has given Baby Arianna a new lease of life, literary, but she is not out of the woods yet.
When Teresa Ndung’u boarded an Air India flight A1962 at 8.05pm on May 17, she had great hope and fear for her then 11 months old ailing first- born who was clasped tightly in her arms.
After gruelling 10 blood and palate transfusions that had punctured her tiny body, a paediatric haematologist at the Kenyatta University Teaching Referral and Research Hospital had in March concluded that the stop-gap measures were not working.
Baby Arianna urgently needed a haploidentical bone marrow transplant, also known as a half match donor transplant.
That is how mother and daughter had ended up in the mercy flight to India but with only Sh2 million — the operation required Sh6 million. They were at the mercy of well-wishers.
At one point, the desperate mother had resorted to selling her kidney — never mind organs trade is illegal — until a public appeal after Baby Arianna’s plight was featured in Nation.Africa secured the funds.
The baby, now 14 months old, underwent the procedure and her mother was the donor. She is out of intensive care, but still in isolation as her immunity is compromised.
The hospital said that Baby Arianna’s new phase of treatment requires an additional Sh3 million to cover all medical costs and accommodation for the next three months.
“A bone marrow transplant process takes 90 days. It's quite exhausting even psychologically but we are hopeful for a happy ending,” Ms Ndung’u said, noting that the transplant was performed successfully.
“What we are doing now is follow up. She is still at a very high risk of getting infections or the body rejecting the new stem cells infused if proper follow up is not done (relapse),” she told Nation.Africa in a telephone interview.
Doctors have told the mother the baby is at risk of getting infections as the hemoglobin levels continue to drop.
“Arianna had two blood transfusions before the transplant. She was also admitted for two days due to high fevers within the same period,” the mother explained while fighting back tears as she recounted what her baby had been through.
“It has been a difficult process with multiple side effects. It is not something I would wish for anyone to go through. But God has been gracious to us because Arianna is still holding up,” Ms Ndung’u said, adding that her sister, Mary Ndung’u is their caregiver.
Baby Arianna Wairimu who urgently needs a bone marrow transplant.
This means that for Arianna to be out of danger and conquer the life-threatening medical condition once and for all, a lot more needs to be done.
“We require two injections daily, morning and evening, and frequent tests to monitor her progress. The costs including accommodation are high because the follow-up is as intense as inpatient care, the only difference is that we don't spend the nights at the hospital,” Ms Ndung’u said last Thursday.
“Everything has to be paid for during every visit, unlike for an inpatient case where the total cost is cleared upon discharge,” she explained.
“The accommodation cost is also high, we are paying Sh 3,500 per day because hygiene is a priority to prevent infections,” she added.
There is one major infection that doctors keep checking every week.
“Graft-versus-host-disease (GVHD) which occurs after organ transplantation. We are lucky that the tests done so far came out negative, “Ms Ndung’u said.
The doctors have, however, made it clear that if Baby Arianna tests positive for GVHD she would immediately be admitted in the ICU.
This is why she has to take all the right medication, eat right and observe high hygiene standards.
Medics said that Baby Arianna’s condition could either be congenital (something she was born with) or infection-related, which requires close monitoring and regular blood tests.
Ms Ndung’u thanked Nation Media Group for publishing the story on Arianna’s plight on July 13. She also thanked Kenyans for their generosity as they came through for them in huge numbers.
“A majority of well-wishers gave between Sh100 and Sh200 and a manager from Broadways Kenya Ltd gave us Sh 200,000,” she said. “A total of Sh4 million was raised, including from two harambees. Some money was used for diagnosis and accommodation. We deposited the balance in the hospital’s account. Arianna was admitted before July 5.”
“Dear Kenyans, your support can make a significant difference in Arianna’s journey to recovery,” the mother pleads, as her voice trailed off as she sobbed.
Support can be channeled through; Paybill: 522533, Account: 7834867 (Arianna’s Medical Fund): M-Pesa number 254720677064 (Teresa Ndung’u - mother).
