Every year, about 100 children in Singapore are born with congenital malformations and newborn diseases, where body organs fail to develop naturally and properly at birth. Despite attempts at surgery to correct and reconstruct various defects, many succumb from respiratory, intestinal or kidney failure, or are left with life-long disabilities.
“One of the major congenital malformations that occur in babies is oesophageal atresia (OA),” said Assistant Professor Amos Loh, Senior Consultant, Department of Paediatric Surgery and Deputy Chair, Division of Surgery, KK Women’s and Children’s Hospital (KKH). OA is a condition where the oesophagus (the tube connecting the mouth to the stomach) is interrupted, such that affected babies cannot swallow, not even their own saliva. “Many of these babies also have associated major anomalies in other organs such as the heart, kidneys, spine, anus or limbs. Most babies with OA did not survive long after birth until recent times, so little is known about the long term issues these babies will face, and that is something that we continue to study,” he said.
Clinical Associate Professor Low Yee, Senior Consultant, Department of Paediatric Surgery and Deputy Chair, Division of Surgery, KKH, recalls an example of a child who had gut immotility and was dependent on intravenous nutrition her whole life. “She eventually passed away at the age of 10, but that is considered a significant improvement in life expectancy compared to a decade or two ago when we used to lose these children within the first two to three years of their life,” she added.
“These outcomes illustrate the limitations of current medical science to sustain or improve the life of such children,” observed Clin Assoc Prof Low.
To improve the outcomes and survival of children with congenital malformations and newborn diseases through research and education, Asst Prof Loh and Clin Assoc Prof Low are part of a paediatric surgical team that embarked on a fundraising campaign to raise $625,000. The campaign, which began on Children’s Day in October 2021 and will end on Children’s Day in 2022, commemorates the 40th anniversary of paediatric surgery in Singapore.
“Our objective is to increase the disability-free life years of children with these disorders, with the vision of extending their years of quality life into adulthood,” shared Asst Prof Loh.
In particular, gifts to this initiative will support three key areas. The first is to develop new technologies to improve the quality of surgical correction of congenital malformations and newborn diseases. Through technological innovation, children born without certain tissues and structures can have them reconstructed using new biomaterials that researchers develop; advanced scanning systems may allow surgeons to see and measure blood flow and tissue health, so that reconstructive surgery performed on these children can be done more precisely; and through targeted nutritional supplementation, babies can be given the precise nutrients to confer protective effects on gut and other organ functions and optimise their outcomes.
The second is to develop novel predictive testing methods to identify patients at highest risk of deterioration and disability. These will aid the patient’s family and surgeons to make pre-emptive decisions to intervene or take remedial actions before irreversible damage sets in. Conversely, this can also help reduce unnecessary surgeries and treatments by screening out those who are not at risk.
Finally, the team hopes to develop supportive care systems to alleviate the burden of disability in incurable disorders.
“Caring for a child with such disabilities is a full-time job and this usually requires one parent’s full-time commitment as the main caregiver, thereby, necessitating them leaving their job to look after the needs of the child,” shared Clin Assoc Prof Low. “For example, some children who have abnormalities of the bladder are unable to pass urine on their own and require insertion of a tube to drain urine regularly. Typically, in their school-going years, parents of such children will come to the school to assist in this procedure every few hours, and similarly throughout the rest of the day at home. This can also place strain on marriages and financial resources for families having to deal with the added costs from repeated surgical procedures, hospital admissions, and medical supplies needed for day-to-day care at home.”
By developing family-oriented programmes, the team hopes to help caregivers of children with incurable disorders better manage the burden of long-term disability. For young adults who have grown up with their congenital disabilities, transition programmes will help them gain independence though self-care and coping. Support groups will also foster a sense of community and provide a safe space for mutual help and increasing awareness among the general public.
Supporting this fundraiser can also have a far reaching impact beyond SingHealth. The surgeons plan to share their new expertise and research findings with paediatric surgeons and nurses in Singapore and the region through scientific forums, workshops, and research publications. Community education and support initiatives will ensure that psychosocial needs of these children and their families are also addressed.
By making a gift, you can be part of this mammoth undertaking and impact thousands of little lives and their families. Donors who make a gift of $5,000 or more will be presented with a limited-edition coffee table book commemorating 40 years of paediatric surgery in Singapore – the first such publication that chronicles the history and evolution of paediatric surgery here.
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