“It was right after Zoha’s first birthday. I could not help but notice that something was not right.” recalls Ishrat Kashif, mother of the now 3-year-old Zoha. Call it a mother’s intuition if you must, she did turn out to be right.
Zoha had a strange bone formation protruding from her back and naturally her parents immediately took her to various child specialists to diagnose the condition. However, it only fueled their distress when their daughter’s condition baffled the doctors and went undiagnosed. Apart from calcium and Vitamin-D deficiency, the blood work showed no anomalies. Not knowing how to help their child only added to their misery.
“We were going from one hospital to another, leaving no stones unturned, in hopes of finding a solution for our Zoha” recalls Ishrat. The added stress of securing appointments at leading hospitals without connections, daily travelling and uncertainty of the future was also taking its toll.
They were then recommended by a specialist to go for an MRI and a CT scan, but many places simply lacked the right equipment, skills and facilities to perform them on children. Many specialists also deemed it too risky for Zoha’s condition and refused outright to proceed with it. Ishrat still remembers the turmoil and imploring the doctors to help find a solution for her little girl.
It was then, that Ishrat and her husband Kashif, were referred to Dr. Gohar Javed, a neurosurgeon at the Aga Khan University Hospital. At his behest, MRI and CT scans were finally performed on Zoha in September 2019. The scans at last revealed a long-awaited diagnosis: Zoha had an extremely rare condition called ‘Fibrodysplasia ossificans progressive (FOP)’, in which skeletal muscle and connective tissue, such as tendons and ligaments, are gradually replaced by bone. This leads to bone formation outside the skeleton that restricts movement. This condition is so rare that it affects only about 3,500 people worldwide, or approximately one in two million people.
Arriving at the right diagnosis was only the beginning of an arduous journey for young Zoha. Her case was referred to Dr Ziaul Islam, a GI and Surgery specialist, for further treatment. Under his careful assessment, damage to the vertebral column was ruled out. He further recommended physiotherapy for Zoha’s hands to help retain motor skills.
The next course of action was surgery to remove the bone itself, which in Zoha’s case was quite risky. Dr Ziaul Islam’s initial hesitation stemmed from the possibility that the bones could be entangled with the musculoskeletal and nervous system. A further prognosis required a full CT scan for Zoha’s back, neck and hands. After the scans confirmed her clear for the surgery, the brave little warrior underwent a 3-hour long surgery and blood transfusion. The outcome of the surgery was successful, as Zoha’s hand mobility started showing improvement, slowly but surely.
Zoha’s last surgery was in June 2020, amid the ongoing COVID-19 pandemic.
“I was fully satisfied with all the precautions and safety measures taken by AKUH for COVID-19. The level of hygiene and cleanliness was impressive. I was particularly glad that they did not proceed without conducting Zoha’s COVID-19 test to ensure her safety.”, said Ishrat while talking about her experience at the hospital during the pandemic.
At the time, her maternal concern was constantly at peak. However, she felt extremely comforted to see the affectionate and caring nurses take care of her baby, especially during the blood transfusion.
“It put my mind at ease to see my little girl in such capable hands during such a stressful moment.”
Today, Zoha is a happy child with the most playful smile on her face. She continues to attend her physiotherapy sessions with Dr. Humaira at AKUH.
“My daughter has achieved all the milestones after surpassing the hardships, and that makes me very proud and grateful.”, remarked emotional Ishrat with a beam of gratitude.
As for Zoha, she is excitedly looking forward to celebrating her fourth birthday with her older sister, loads of cake, balloons and presents in October.