Parents looked for right diagnosis and treatment for their son for more than two years
Abu Dhabi: Little Omar had always been a healthy boy, but when he turned about a year and a half, he started complaining of persistent pain in his tummy. What was worse, his pain and discomfort showed no signs of subsiding, even as his worried parents rushed from doctor to doctor trying to find out what was wrong.
“Doctors suspected there was something wrong with his liver. But hundreds of tests conducted over two years never revealed any issues. In the meantime, my son became sicker and sicker,” Ahmad Takieddin, Omar’s father and a 37-year-old engineer from Syria, told Gulf News.
“By the beginning of 2018, he had lost so much weight, and still, no one knew what was wrong with him. He was weak, and his lungs had filled with fluid. My wife and I had given up hope, and were preparing ourselves to say goodbye to him any day,” Takieddin added.
Then, a surprising find with the help of an MRI and an echo helped doctors at the Shaikh Khalifa Medical City figure out the problem. It wasn’t four-year-old Omar’s liver that was the problem, it was his heart.
“The protective layer around his heart, known as the pericardium, had become thick and hard like a plaster. The organ was therefore unable to pump blood around the boy’s body in a condition known as constrictive pericarditis. The high pressure in venous blood vessels (which bring back blood from the organs to the heart) also meant that his intestines were unable to receive protein from blood, and he kept losing protein in his stool, resulting in stunted growth and swelling of parts of his body, including his face, abdomen and limbs,” said Dr Nishant Shah, consultant paediatric cardiologist at the hospital.
Constrictive pericarditis is itself very rare in children, occurring in less than one in a million. And it is even rarer for the condition to lead to protein loss in the way that Omar was experiencing, the doctor explained. The condition is known medically as protein-loss enteropathy.
“Omar’s pericardium was about six millimetres thick, when the layer is typically less than two millimetres in thickness. It was also hardened. It was only the third case of constrictive pericarditis I had seen in a child in 15 years, and the only one where it was leading to protein loss,” Dr Shah explained.
The family, who live in Ajman, were asked to bring Omar over to the capital. But the task was not an easy one because his lungs were filled with fluid. The fluid was slowly reduced, but one lung remained fully blocked even as he was transported by hospital to the capital.
On February 18, doctors performed an open-chest surgery to remove his pericardium. Within little more than a month, all of Omar’s symptoms subsided.
“Everything about my little boy changed. He had been moody, and never wanted to play with us or his siblings — his twin Farah and his elder brother Mohammad. He didn’t like to eat and was difficult to handle. Post-surgery, however, I felt like I had a new son. Omar began to look for social interaction. And whereas he used to only eat a tiny portion of egg and rice earlier, he began to ask for other foods like chicken and mutton,” Takieddin said.
Without the surgery, Omar would have survived a few more years at the most, Dr Shah said. Today, he can look forward to a full life with no related complications in the future.
“Words are not enough to describe what this surgery has meant for me and my family, and I am grateful to the UAE leadership for providing this level of health care to its residents. It gave us our son back when he had given up hope,” an emotional Takieddin said.