Jumana and Jannah recover well after complex corrective surgeries
Abu Dhabi: Jumana and Jannah are a pair of bubbly twins. Having just turned one, they are a delight to anyone who meets them. Few can imagine all that have gone through in the 12 months that they have been around. But as their father Shaik Jakeer Hussain, an Abu Dhabi-based nurse, recalls, the girls were born with heads that were abnormal in shape. It was something that became more obvious to him and his wife by the time the girls were four months. While one of their heads appeared broad, from side to side, and narrow from front to back with a protrusion of the eyes, the other’s forehead had a bulge on the left with a seemingly flattened right side, among other deformities. Realising that things were not quite how they should be, he and his wife approached Dr. Essam Elgamal, Consultant Neurosurgery, at the Burjeel Medical City, Abu Dhabi. A series of investigations later, a multi-disciplinary team, led by Dr Elgamal, concluded that the girls were suffering from craniosynostosis, or deformities in the skull, which could have serious ramifications if it were not addressed at the earliest. What followed were complex surgeries where the doctors actually reshaped the skulls of Jumana and Jannah.
What is craniosynostosis?
Craniosynostosis is a birth defect in which the bones in an infant’s skull fuse together very quickly, leading to an abnormal head shape and hindering brain growth, thus causing potential developmental issues. The condition is said to occur in approximately one in 2,500 live births. According to doctors, it is unusual to come across identical twins with craniosynostosis with no evidence of genetic abnormalities. In the twins’ case, Dr. Elgamal explains that the head shape differed in both twins. “The first twin’s head had a broad side-to-side appearance while it was narrow from front to back with protruding eyes with evidence of raised pressure inside the head. The second twin’s head had a flattened appearance on the right side of the forehead with the forehead bulging on the left side and back of the head with abnormal, asymmetric eyes.”
He says the medical team had to conduct two separate surgeries involving procedures like “fronto-orbital advancement, calvarial remodeling, and forehead reshaping” to correct the shape of their skulls and help increase the amount of space for their brains to grow. The procedures, which were complex and delicate, required a high level of expertise. During the surgeries, conducted two weeks apart, the doctors spent hours carefully removing and reshaping the bones in their skulls to allow for normal brain growth and development. The team admits there were tense moments in the operating theatre, but they were determined to ensure the best possible outcome.
“The first twin suffered severe hypotension towards the end of one procedure, and we had to get an urgent cardiac doppler to rule out air embolism. During the second twin’s surgery, bleeding was as expected, and the child received blood transfusion. But both surgeries were successful, thanks to the expertise of our multidisciplinary team, including the neurosurgery, anesthesia, PICU, nursing, and pediatric cardiology,” said Dr. Elgamal.
Road to recovery
Jumana and Jennah, who are on the road to recovery, are expected to make a full turnaround in due course. Due to the complexity of the case, the twins must wear customised helmets that are necessary to improve their head shape during the next six to 12 months of recovery. They will also require regular follow-ups till they turn six, when the brain completes 90-95 per cent of its growth, according to the doctors. Hussain and his wife, who are a relieved couple, say feel extremely grateful. “We are so thankful to the doctors and nurses who have taken care of our babies. They have given our children a chance to live a normal life,” says Hussain. The story of Jumana and Jennah holds out an important lesson for all parents, says Dr. Elgamal. According to him, parents need to be vigilant of signs and symptoms that could point to a serious problem. A misshapen skull, small and hard ridges on the skull, and an asymmetrical face could indicate craniosynostosis, he explains.
“Surgical intervention becomes necessary in avoiding problems during brain growth,” he points out.
What happenes craniosynostosis is left untreated?
“In many non-operated cases, patients may suffer a decline in school performance, migraines, and raised intracranial pressure, in addition to psychological problems resulting from bullying. For the best surgical outcome, it is optimal to seek treatment before the baby is one year old,” he advises
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