UAE: 7-year-old diagnosed with rare disease in womb gets new lease of life after complex heart surgery

Alyan had a history of losing consciousness, with his family needing to conduct cardiac compressions at home

Alyan. Photo: Supplied
Alyan. Photo: Supplied

A Staff Reporter

Published: Thu 13 Jan 2022, 3:01 PM

Last updated: Thu 13 Jan 2022, 3:06 PM

Medics at Sheikh Khalifa Medical City (SKMC) saved the life of a 7-year-old boy with a serious and complex congenital heart condition by implanting an Implantable Cardioverter Defibrillator (ICD).

Alyan was diagnosed with a very rare form of congenital cardiomyopathy in the womb. He had a history of losing consciousness, with his family needing to conduct cardiac compressions at home during such situations.

In July 2021, he collapsed and was unresponsive for seven minutes, experiencing two episodes of exertional syncope, or fainting, with the second taking place in October.

Alyan with his father. Photo: Supplied
Alyan with his father. Photo: Supplied

In SKMC, Abu Dhabi Health Services Company (SEHA)-affiliated hospital, it was discovered that Alyan had a slow heart rhythm which would have been the main cause for loss of consciousness, and with the potential of an opposing risk of an abnormal dangerous rapid heart rhythm.

SKMC’s Consultant Cardiologist, Dr Christopher Duke, made the initial recommendation to place a temporary pacemaker, which was later replaced with the implantation of a defibrillator. The latter was done to manage both fast and slow heart rhythm problems, ensuring Alyan was in the best position possible to be treated for his ongoing symptoms.

Complex surgery

Dr Andrew David Mclean, Acting Chair of Cardiac Sciences, said, “With a team of specialised and distinguished surgeons, we were able to successfully perform this complex surgery locally, which otherwise would have had to be done overseas; keeping newborns and infants, like Alyan, close to home.”

The medical team implanted the defibrillator through a complex surgery, as Alyan was weighing in at a mere 20kg, which resulted in him having incredibly thin subcutaneous tissues (the innermost layer of the skin). This meant that the surgical team had to adjust the surgery plan for best results and implant it within the axillary (located in or near the armpit) position.

This form of complex surgery, called an ‘Axillary Generator Implantation’, was a part of an international research project that Dr Duke was involved with.

It ensures better tissue coverage over the larger generator so that Alyan can be protected against any potential trauma during normal childhood activities and minimal scarring as an added benefit.


Dr Christopher Duke, Consultant Cardiologist said, “Pacemaker generators are usually implanted in the anterior, or the front of the chest. However, we took into consideration other aspects such as mental, functional, and cosmetic standpoints. Alyan has already been through so much, so we wanted to ensure he had the best quality of life post-surgery and to make him not feel self-conscious. His father had initially intended to travel abroad for treatment until they were referred to SKMC by their family friend, and I’m glad that was the case as treating him in their country of residence meant added convenience and reassurance.”

Alyan’s father praised the efforts of SKMC’s medical and surgical team, added, “I cannot express how grateful I am to Dr Duke and the medical team at SKMC. Without a doubt, seeing your child suffer is an incredibly difficult experience. Initially, we were planning to travel abroad for treatment but to be able to keep Alyan home, close to his friends and family played a tremendous role in his comfort and recovery throughout this entire experience. Through the support we received at SKMC, we received excellent care and continue to be incredibly thankful that we were referred to SEHA for treatment. Thank you for giving my son a chance to live a healthy, normal life.”

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