Baby girl born without tibia is a rare case and a series of surgeries can help her regain use of her legs
After five years of marriage and the fear of not being able to have children, Somia, 33, delivered a baby girl on January 5 this year. Somia, however, was to soon receive a rude jolt.
“After I was brought back to my room from the operation room, I heard my husband speaking to my mother. I overheard him say something that sounded like there was something wrong and, when I asked him about it, he said our baby’s hands did not have as many fingers as they should,” Somia told Gulf News.
Her baby girl, Muntaha, was born with only four fingers on her left hand and three on her right. She also has two toes on each foot and no tibia, the large bone located in the lower front portion of each leg, giving her the appearance of having inverted lower limbs. The condition, also known as Tibial Hemimilia, affects only one in a million babies.
Such was Somia’s shock and state of panic on hearing the news that she had to be administered a sedative to calm her down.
“When I woke up, I demanded to see my child and there are no words that can describe how I felt,” she recalled.
The hospital Muntaha was born in misdiagnosed her condition. The hospital said the infant was suffering from bilateral claw hands, bilateral complex deformity of the lower limbs with bilateral varus deformity and complex foot deformity.
“Arthrogryposis [is] the possible diagnosis for such [a] case,” the hospital’s report read.
Arthrogryposis, meaning joint contractures or short muscle tissues, and claw hands, are both wrong diagnoses of Muntaha’s condition.
Determined to find a solution to her daughter’s condition, Somia visited a number of medical facilities in Abu Dhabi with only a few specialists able to tell her what exactly was wrong with her daughter and how it could be fixed.
“It was extremely difficult finding a paediatric orthopaedic doctor but once I did, he told me that an operation can be done on her legs but she would still not be able to bend them and, therefore, would never regain full control of her lower limbs,” she said.
After extensive research, Somia was able to locate a doctor in Florida, USA, who specialises in limb lengthening and reconstruction, in addition to joint preservation. She corresponded with the specialist and emailed him her daughter’s medical reports and X-rays. “He informed me that her legs are completely treatable and she would be able to regain full control of her leg functions, after three surgeries and physical therapy,” Somia said.
According to the expert, a two-step, three-surgery procedure is required. The first step includes fixing an external device on each lower limb. Attached to the femur, fibula (the other major bones in the upper and lower part of the leg respectively) and foot bones, the device will straighten the knees and then the foot over a period of five months as the equipment is regularly adjusted.
If a kneecap is found, it can be connected to the fibula to create a weight-bearing surface but, if not, the fibula would need to be centralised, ligaments must be made and muscles transferred to give the legs active control for walking, the specialist’s e-mail informed Somia.
The first surgery alone would require 10 hospital visits and $124,222 (Dh456,261) and the total cost of the procedures will amount to $200,000 (Dh734,510).
“I would like for anyone who can empathise with my daughter’s struggle to reach out with whatever they can so that, God willing, we can perform the surgeries needed and save our daughter from a difficult future,” the mother pleaded.
Muntaha, who is now almost five months old, is very social. “She always greets everyone with a smile and loves seeing other people, especially children,” said Somia.
“I want to see my daughter walk. I want her to be able to do whatever she wishes without being judged or looked at differently and the earlier the better, not just for her psychological health but also to keep her from experiencing complications when she grows up,” said Somia.