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On Freedom Day, Arosha was discharged free of thalassaemia
- Amidst the challenging times of COVID-19 a team headed by Consultant Haematologist Dr. Nipunika Senadheera at the Lady Ridgeway Hospital (LRH) for Children creates history by carrying out the first ever allogeneic bone marrow transplant in a state hospital in the country
Arosha, the trailblazer of allogeneic bone marrow transplants in the state health sector. Pix by Priyanka Samaraweera
Laughter shakes her slender body and her face is wreathed with a big smile as she points or nudges her mother, eyes riveted on the TV.
I too am drawn to the screen but looking through a glass window. On the TV is the hilarious action-packed cartoon ‘The secret lives of pets’ with a dog of good breeding and a mongrel running into mischief.
The little one enjoying the cartoon is not at home but in a cozy room of the premier Lady Ridgeway Hospital (LRH) for Children, Colombo, oblivious that she is a trailblazer providing hope for all children of Sri Lanka.
Seven-year-old Arosha Nethmini Herath from rural Galenbindunuwewa in the Anuradhapura district is the very first child to undergo an allogeneic bone marrow transplant (a BMT from a donor) in a state hospital in the country.
Five long years of challenges and various hurdles have been finally overcome and on December 23, this pioneering BMT was performed.
The Sunday Times which has closely followed the trials and tribulations faced in the setting up a separate building and also getting staff, exclusively reported (on September 27, 2020 headlined ‘Big step for Sri Lanka’s health sector and children’), the opening of LRH’s BMT Unit on October 1 that year.
Just over a year after, having also faced the travails thrown at them by the COVID-19 pandemic, Arosha has become the first to undergo this life-saving procedure in the state health sector.
Podi duwa had been diagnosed with thalassaemia when she was just three months old, says her father H.M. Priyantha Herath, keeping vigil outside the infection-free BMT Unit with the daughter having been admitted for a check-up this week.
Since the diagnosis, for long years, they were in and out of the Anuradhapura Teaching Hospital, attending the clinic or getting blood transfusions for Arosha who has hardly been in a classroom like other children of her age.
A few of the team members (from left): Dr. Shanika Vitharana, Dr. Nipunika Senadheera, Nurse T.D.G. Dananjali, Nursing Officer-in-Charge M.D.H. Gunarathne, Health Assistant I.A.D.K. Dilrukshi, Dr. Safrana Fazeel and Dr. Jinali Ratnayake.
The parents tried the private health sector, making a futile effort, selling the land on which they had built a humble home in Galenbindunuwewa, to collect the Rs. 4.5 million needed at that time (now it is much more) to save their little one’s life. The family was in dire straits even to meet their day-to-day living costs, as Priyantha the ‘rice-winner’ could not do his driving job.
Then the desperate family got a glimmer of hope – the Anuradhapura doctors informed them that there was a move to begin bone marrow transplantation at the LRH.
Headed the family to Colombo – Priyantha, wife Inoka Priyadharshini Dissanayake, Loku Duwa, Putha and Podi Duwa. Arosha was registered and screened among the 100 other children who had been referred to the LRH from all parts of the country. The process to recovery started then.
Priyantha, Arosha’s father
“We admitted Arosha to the BMT Unit on December 4, along with her mother and her brother who was the donor, as we had to ensure that she would remain infection-free,” says Consultant Haematologist Dr. Nipunika Senadheera, explaining that she was among 20 children who had compatible donors.
The children who need bone marrow transplants include those suffering from thalassaemia, aplastic anaemia and immune-deficiency syndromes.
Dr. Senadheera explains that those with thalassaemia require regular blood transfusions but face the danger of an iron overload which results in their heart and liver being affected by iron deposits. This could ultimately lead to their deaths, lives snuffed out at a young age.
Once admitted to the BMT Unit, Arosha had been administered chemotherapy for conditioning (that is to clear her diseased bone marrow). Two weeks later, she had been infused the stem cells, through a procedure similar to a blood transfusion. The stem cells were from her brother.
Her 12-year-old brother, Akalanka, readily agreed to give his stem cells to save Arosha, says Priyantha.
The stem cells were harvested through needles inserted to Akalanka’s hip bones after putting him under general anaesthesia.
…….And the team then watched and waited and the tension is felt even by the Sunday Times as they say how worried they were. With the ‘conditioning chemotherapy’ all Arosha’s blood counts had tumbled as they have to.
“There was a point when her neutrophils (a type of white blood cells that fight off infection) were zero, leaving her very vulnerable,” says Dr. Senadheera, as Consultant Haematologist Dr. Shanika Vitharana adds that it was a “very worrying” time.
Each and every team member had gone beyond their call of duty to ensure the little one’s safety – the doctors in attendance putting all family obligations on hold; the nurses regularly checking the central infusion line attached to Arosha to make sure that an infection would not creep in; and the health assistants doing their bit and more to keep the environment within the BMT Unit including the walls and floors squeaky clean, free of unseen bugs.
“Arosha remained vulnerable longer than expected for about three weeks,” says Dr. Vitharana.
Then came long sighs of relief, as slowly but surely, with the infusion of her brother’s stem cells, the counts began climbing.
“Godak sathutui (very happy),” says Nursing Officer-in-Charge M.D.H. Gunarathne, with Nurse T.D.G. Dananjali explaining how they battled so that not even a “punchi visha beejayak (small bug)” would affect her and Health Assistant I.A.D.K. Dilrukshi says all worked as one.
Ms. Gunarathne elaborates how for 1½ months they had to keep Arosha and her mother restricted to their room for the patient’s welfare and benefit, not allowing their spirits to flag but boosting their morale and also entertaining the child with funny cartoons.
The BMT Unit team comprises Consultant Haematologists Dr. Nipunika Senadheera & Dr. Shanika Vitharana; Medical Officers Dr. Priyanthi Premarathna, Dr. Safrana Fazeel, Dr. Jinali Rathnayake & Dr. Sathya Gurusinghe; Nursing Officer-in-Charge M.D.H. Gunarathne and Nursing Officers H.M.R.P.K. Herath, N.G.S.M. Narangaspitiya, D. Manori Silva, T.G.D. Dananjalee, A.S.R. Uthpala & R.M.K. Sathsara; and Health Assistants H.S.P. Madhubhashini, I.A.D.K. Dilrukshi & G.D.Y. Madhurani.
They had been fully supported by LRH Director Dr. G. Wijesuriya and Paediatricians including Dr. Deepal Perera; Microbiologists including Dr. Dhammika Vidanapathirana; Transfusion Physician Dr. Nihal Guneratne; and Pharmacists, while they had sought expert opinion, willingly given, by Consultant Haematologist Dr.Lallindra Gooneratne and Consultant Paediatrician Dr. Ruwangi Dissanayake.
From across the Palk Strait, has come guidance throughout from Prof. Vikram Mathews of the Christian Medical College, Vellore, India.
Everyone has worked as one, to give new hope to this child, to her family and to Sri Lanka’s children who need a life-saving allogeneic BMT.
It was aptly on Freedom Day (February 4) that Arosha was discharged free of thalassaemia!
| Relief over daughter’s health but worries over finances Arosha’s family is very happy that their duwa is safe from thalassaemia……but their finances have hit rock bottom. Even though every service at the BMT Unit is free, they have had to make huge sacrifices, as they had to relocate to Colombo close to the LRH while Arosha was undergoing the bone marrow transplant and to enable regular follow-up visits at the hospital. Seeing the plight of the family, a donor from the Rotary Club, Colombo, has generously come forward to meet the cost of the blood tests that cannot be done in Sri Lanka but have to be sent abroad each month. Priyantha has not been able to work for over three months, the family is split with the elder daughter staying behind with relatives in Galenbindunuwewa to study for her Advanced Level she has just sat. For the relocation to Colombo, the family has rented a home close to the LRH, paying a large monthly rent they can ill-afford. Of course, there is no question in the hearts and minds of this family – any sacrifice is worth it as they want a long life for their Arosha. | |
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