A 23-year-old UCC medical graduate, Sinéad Keane is part of a foundation helping terminally ill children in Vietnam, writes Amy Lewis
When medical intervention is not a viable option for a gravely ill child, palliative care is key to making their final days more comfortable. Thanks to a small team of dedicated volunteers in Vietnam, hundreds of terminally ill children are living out their final days in a loving and peaceful environment.
Kerry-born nurse Sinéad Keane is one part of this group of volunteers that form the NGO Little Feather Foundation. Established in 2013 by Ella James and Kate Loring from Australia, it has grown into a team of seven who are keen to make a difference. Despite their various backgrounds and nationalities, they all have one aim in mind: To provide and advocate for palliative and hospice care for terminally ill children in Vietnam.
Sinéad, who has been involved in the group since 2016, found herself working with Little Feather Foundation by chance. Having left her demanding nursing job in Cork to travel and teach English, the Tralee native stumbled across a Facebook post seeking a volunteer nurse in Ho Chi Minh City. She landed the role and now volunteers in the foundation’s government-run centre five mornings a week.
“Most of the children I work with have a condition called hydrocephalus which is caused by the build-up of cerebrospinal fluid in the brain. Unfortunately, for a lot of them, their condition has gone too far for treatment so we just provide basic comfort measures and whatever other care they need,” explains the 23-year-old UCC nursing graduate.
A typical day for Sinéad sees her providing care and company to approximately 20 severely ill and disabled children alongside another nurse from the organisation.
“We arrive in the morning after the children have been bathed by their nannies. There are bouncers for all of the kids which allow them to sit up while we massage and comfort them. We use baby oil and moisturiser to prevent their skin from becoming dry and Vaseline to keep their eyes clean. A few of them have really bad pressure sores so we also provide healing measures for them. But, for example, one child has two very bad sores and for the past eight months we have been trying to heal them. Because he is towards the end of his life and is really malnourished, they aren’t going to heal so we just have to try to prevent them from spreading,” she says.
“In cases like this, you want to think you are helping but sometimes it can be stressful.”
Advocating for the children is another important role carried out by the nurses, who must communicate with the full-time staff in the centre to ensure children’s needs are met around the clock. “If a child is in pain, has a temperature, or has digestive issues, we communicate with the nannies and nurses in the centre regarding the provision of adequate relief from the symptoms. Because children with hydrocephalus are more prone to these problems, providing relief from these symptoms is extremely important in our role as palliative care nurses,” explains Sinéad.
In November 2016, Little Feather Foundation introduced a ‘hospice from the home’ service, which sees their nurses pay regular care visits to terminally ill children in their homes. These children, who are usually living in extremely rural and poverty-stricken communities, would otherwise struggle to receive the medical care that they require.
“Our first visit came about when our head nurse was doing a trek in rural Vietnam. She told somebody in passing that she works with a charity for children with hydrocephalus and a woman in her group mentioned a child with the condition in her community,” says Sinéad.
“Since then, we have been helping to take care of her. After we initially assessed her, we brought general things like a bouncer and pain relief. We also brought a high-calorie formula to prevent her from becoming malnourished as a result of her digestive problems.
“Once a month, a nurse goes to visit to check how she is doing and also, to see if there is anything that the family needs. From the family’s point of view, it’s great that they have some support. They know that they are not forgotten about and that they have someone to talk to.”
While Little Feather Foundation is equipped to deal with a wide array of illnesses, it is predominantly working with children with hydrocephalus. The prevalence of this condition in Vietnam, which causes the head to swell and leads to a host of physical and neurological problems, is believed to be a lasting effect of the dispersion of Agent Orange during the Vietnam War.
Between 1961 and 1972, the US military sprayed some 12m gallons of this dioxin-containing chemical across Vietnam to remove dense foliage that provided enemy troops with cover and food. It was later linked to health issues such as tumours, rashes, psychological symptoms, cancer, and birth defects, spanning generations. Vietnam Red Cross estimates that, since the war ended in 1975, around 150,000 Vietnamese children have been born with birth defects due to dioxin found in Agent Orange.
While hydrocephalus cannot be cured, its symptoms can be greatly reduced with medical intervention.
“With proper treatment, their heads do not have to grow that much. Unfortunately, the healthcare system is so behind here that the children don’t always get the necessary treatment on time,” says Sinéad.
Working with the Little Feather Foundation is a far cry from Sinéad’s previous role as a nurse in Ireland, where she felt constantly exhausted due to long hours and lack of staff.
“Since being here, I have learned that I love providing nursing care. At home, you don’t provide care, you are just running around trying to get all of the jobs done. You don’t have time to be with patients. Now I’m spending all of my time with kids, one on one, reading, and talking to them, comforting and taking care of them.”
Her role is not without its challenges. “We want to make more of a difference here but it can be very difficult when there are no palliative care guidelines or auditing in the country. There’s nothing to keep the standards high,” says Sinéad.
“The nurses here also have different views on how problems occur. Some of it is down to superstition. For example, some nurses think if a child has a pressure sore, it’s from milk falling on their head. They don’t think it is from not turning the head enough. It can be difficult to try and communicate these things with the nurses, especially with the language barrier, but thankfully we have a translator.”
In order to provide children with medicine, pain relief, and comfort devices, Little Feather Foundation relies on donations. While this can sometimes add to the pressure of the team’s daily work, overall, they have been astounded by the generosity of people around the globe.
“For the most part, our work is extremely positive and you feel like you are truly helping. There are challenges and it is an uphill battle when it comes to trying to change big things. But if you keep it simple and keep in mind that you are helping the kids, that is the main thing,” says Sinéad. “We know that we are helping when we can see them smiling. Or when they start crying and and you lift them into your arms and they go to sleep, you feel like you are helping in that moment.”
(First published in the Irish Examiner on August 3, 2017. Available online at: http://www.irishexaminer.com/lifestyle/features/irish-nurse-finds-her-calling-helping-terminally-ill-children-find-a-peaceful-ending-456235.html)