This tiny life is in our hands

For the past two weeks the Sunday Times has highlighted the plight of a young couple whose unborn baby suffered from a genetic disorder. Now that the baby is born, bringing much joy to the couple who lost two previous babies, the need for a bone marrow transplantation in India becomes even more urgent.
Kumudini Hettiarachchi reports

The beautiful and bouncing baby boy was born around 8.30 in the morning on Monday, July 12. For him, the milestones are not years – but months. Will he live a month, two months or only three months, like his two brothers before him?

His tiny life is in our hands – will we able to collect the Rs. 3 million that his desperate parents, K.B.N. Damayanthi and K.W.N. Neil Shantha, need to take him to India for that crucial bone marrow transplantation?

So far we’ve been able to collect Rs. 510,286 and every contribution, big or small, like the tiny drops of water that make the mighty ocean will count. As baby Sanjana Praveen Shivanka weighing 3.35 kg was taken to his humble home in Dippitigala, Lellopitiya, Ratnapura, the joy of his parents is tinged with fear and doubt.

Baby Shivanka: Doing fine for now

“The baby is fine and healthy at the moment. He is feeding well at his mother’s breast,” said the Consultant Paediatrician of Ward 3, the Professorial Unit of the De Soysa Hospital for Women, explaining that because the baby has been found to be affected by Severe Combined Immuno-deficiency (SCID) Syndrome no vaccination such as the BCG, drugs or blood have been given. The BCG is a live bacteria vaccine against childhood tuberculosis and would certainly cause immunity issues if given to the baby.

Not only the staff of the Professorial Unit but also those in the special baby-room rose to the occasion to look after the baby, she said, adding that soon after his birth he was placed in an incubator transferred from the baby room to the ward.

There was “minimal handling” of both the baby and the mother and also strict handwashing policies to prevent them from catching any infection, the Paediatrician explained. “All newborns are immuno-suppressed, and this baby more so. Therefore, we restricted the number of visitors.”
The paediatric team was “protecting” him like their own baby.

The other precautions included isolating both mother and baby in a corner of the ante-natal ward rather than the post-natal ward to reduce the chances of infection, the Sunday Times understands.
When the Sunday Times visited the hospital on Monday, there were extra-precautions than the usual to protect newborns here.

The Professorial Unit nursing and minor staff had been busy all weekend “spring-cleaning” the ward in addition to the routine clean-ups.

While Consultant Obstetrician and Gynaecologist Dr. Athula Kaluarachchi and his team of doctors monitored Damayanthi closely last weekend, the nurses and minor staff had stripped the beds, double-disinfected the area and “autoclaved” or sterilised all of Damayanthi’s and the to-be-born baby’s clothes.

“These were special precautions,” said Ward-in Charge Nurse U.A.L. Kumarasinghe indicating that a gowned, masked and gloved nurse was tasked with looking after mother and baby. Usually, according to her, a mother’s clothes worn during delivery and the baby’s first set of clothes are autoclaved but in this instance they did so for all the clothes of both mother and son. Damayanthi was also given a hand-rub to use before handling the baby.

The number of people who visited other patients was restricted and all were asked to remove their footwear to prevent germs going into the area, she said, adding that even a special mop was allocated to clean the floor area of Damayanthi’s cubicle.

Meanwhile, as soon as the baby was born under the guidance of Dr. Kaluarachchi and his team through a caesarian section, with Damayanthi undergoing only spinal anaesthesia and being conscious during the delivery, the umbilical cord blood of the baby had been rushed to the Medical Research Institute (MRI) to confirm whether the baby did have SCID.

“During Damayanthi’s 20th week of pregnancy, we tested the foetal blood sample and diagnosed that the unborn baby was affected by SCID,” said MRI’s Consultant Immunologist Dr. Rajiva de Silva, adding that the cord blood was tested just to confirm the earlier diagnosis.

Explaining that to identify SCID and also other immune deficiency diseases, flow cytometry is done, the facilities for which are available at the MRI. Dr. de Silva said that the foetal blood screening found that he had no T and NK cells, both which fall under the lymphocytes. Through the cord blood they found that he also didn’t have T-cells, once again under the lymphocyte category while confirming that he had no NK cells.

“Fortunately we were able to ascertain that the baby had SCID before his birth so that all precautions could be taken,” he said, adding that earlier the couple’s second son had been referred to him for such tests because there had been 14 male deaths within three generations.
Damayanthi’s eldest had died and we detected that the second was also with SCID but there was nothing that could be done, he added.

Hope their third can be helped, Dr. de Silva added.

Time is of essence

Time is of essence so please send whatever you can spare to save baby Sanjana Praveen Shivanka. The details of the bank account set up by the Sunday Times which has teamed up with the Human Genetics Unit of the Colombo Medical Faculty are:

Bank: Bank of Ceylon
Branch: Lake House branch
Account No. 0007283471
Swift Code: BCEYLKLX (for foreign remittances)

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