“Once a year is not enough”: Tiny Hearts holds annual camp for children with heart defects

Around 100 children and their parents will travel to Malé this week for the ‘Care for Tiny Hearts’ camp which seeks specialised treatment and detection for congenital heart defects.

An estimated 80% of these patients will have travelled long distances from the atolls for this rare opportunity for local treatment.

This is the sixth camp organised by local NGO Tiny Hearts of Maldives, running until March 26 at the Indira Gandhi Memorial Hospital.

Held just once a year, the event seeks to provide children registered with Tiny Hearts of Maldives the opportunity to consult pediatric cardiologists without travelling abroad.

“We have proved something is viable,” co-founder Ali Muaz told Minivan News. “Once a year is not enough, but it’s the most we can give.”

Tending to the patients over the course of the event is one local doctor, alongside two Indian doctors specialised in paediatric cardiology.

In addition to this, a special Fetal Echo workshop will also be conducted tomorrow for radiologists working in Malé. The purpose of this workshop is to assist in early detection and timely treatment of any defect present in the baby’s heart during pregnancy.

Tiny Hearts of Maldives was founded in 2009 by Ali Muaz and Fathimath Hishmath Faiz, in memory of their son Keyaan, who was born with a congenital heart condition and died at just 2 and a half months.

The experience of their son’s condition lead them to realise the critical need for access to information and assistance in dealing with specific health issues that affect newborns, infants, and young children in general, in the Maldives.

There are now 320 children registered with the organisation, with most coming from the sparsely scattered atolls outside the capital.

Unfortunately, there are only 1-2 cardiologists working all year round in the Maldives, according to Fiunaz Waheed of Tiny Hearts.

“It’s very difficult to get an appointment most of the time,” she added, “so they [parents] find it very difficult.”

When asked by Minivan News how the government could support a wider network of local treatment, Fuinaz preferred not to comment.

Muaz explained that around 80% of the patients who visited the camp came from atolls, with some travelling hours to attend. Regardimg the distribution of healthcare available to local islands he noted, “I’m hoping for it to get better,” though Muaz was also reluctant to comment on the ways in which the government could implement this.

One of the many issues faced by a centralised healthcare system is the lack of contact between doctors and patients, with Muaz explaining that the main method of contact is individual telephone calls and texts.

Another major problem is the long and costly journeys faced by families to reach specialist treatment – a well-documented problem for the country’s numerous citizens living with Thalassemia which requires regular visits to the capital, at great financial and physical cost to patients and their families.

The deficiencies in local healthcare often mean that families will look to travel abroad to get the essential treatment they need.

However, Fiunaz of Tiny Hearts explains that “sometimes its very difficult to send them abroad also, because its very costly.” She added that the Tiny Hearts camp is a rare opportunity for families to get the “proper treatment in the proper time”.

When asked about the possibility of expansion for Tiny Hearts, Muaz stated that they have signed an MoU with the ministry of education, and they hope to continue with their valuable work.

Minivan News was unable to gain a response from officials at the Ministry of Health at the time of press.

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