from the coverfrom the coverA2 A3Gulf News | Tuesday, March 19, 2013 | gulfnews.comgulfnews.com | Tuesday, March 19, 2013 | Gulf News

Dubai

Eight-year-old Mohammad Abdur Rahman Ahmad was born with congeni-

tal scoliosis, a spinal deformity that restricts the growth of his lungs. The condition that Mo-hammad suffers wouldn’t have allowed him to reach adulthood without treatment.

The condition is relatively rare, but Mohammad’s case is unusually severe and even rarer. It’s estimated that one in 10,000 children suffers from congenital scoliosis. Some 60 per cent of those with the con-dition are girls. Two-thirds of the children who have an op-eration to fix the spinal and rib

cage defect don’t require fur-ther surgery. In Mohammad’s case he’s had three operations so so far and faces more every nine months or so, depending on his rate of growth.

“Everybody is chipping in a little bit to help make this sur-gery happen for Mohammad,” Dr Marc Sinclair said. He is the founder of Little Wings, the non-profit organisation. Mo-hammad has had three surger-ies since he was taken under the wing of the foundation.

The first surgery was per-formed to separate his ribs that were fused together and cost over Dh400,000. Every sub-sequent surgery since then has cost over Dh100,000.

The Little Wings Foundation has been funding these surger-ies with the help of private do-nations from various schools, families and companies with corporate social responsibility strategies.

Apart from monetary dona-

tions, the foundation has had a lot of support from volunteers like Dr Fritz Hefti. He is the sur-geon who performed Moham-mad’s initial surgery in Swit-zerland. For the most recent surgery, Dr Hefti flew to Dubai for the weekend and assisted Dr Sinclair.

“We value the time that peo-ple and volunteers like Dr Hefti have invested in the organisa-tion,” Gillian Beale said. She is the co-director of The Little Wings Foundation and a com-mitted volunteer.

“This is a process — it doesn’t end with one surgery,” Beale said. “But with the help of our network, we can carry on help-ing children like Mohammad who deserve a chance at a good life.”

The Little Wings Foundation can be reached at info@thelit-tlewingsfoundation.org.

■■ Maryam Mirza is an intern at Gulf News

Mohammad’s condition is rare and severeCharity funds regular surgeries to allow brave boy to enjoy a normal life

By Maryam Mirza Special to Gulf News

Growing up, a surgery at a timeevery 9 months, little mohammad must get new titanium ribs to allow his body to grow normally

Dubai

The first thing you no-tice when walking into the hospital room is Mohammad’s cheeky grin and huge brown

eyes. From the first glance you can tell he is anything but shy. Deeply involved in the cartoon playing in front of him, Moham-mad’s eyes light up when he sees potentially new friends walk through the door. He couldn’t say much but every time he was asked a question, his eyes got bigger and his smile wider. His father and mother were standing by his bedside, unwavering — a concerned but relieved expres-sion on their faces.

“He’s a very cheeky boy,” his father said. “He has a very technical mind. He knows how to work my phone better than me. As a person, he is extremely loving.”

From birth, Mohammad Ab-

dur Rahman has lived with a spi-nal deformity that restricts the growth of his lungs.

If left untreated, the Pakistani boy’s condition is fatal. Moham-mad’s parents were uncertain of the road ahead until they were told about The Little Wings Foundation.

Two years ago Imtiaz Ah-mad, Mohammad’s father, approached Dr Marc Sinclair about his son. Dr Sinclair is the founder of The Little Wings Foundation, a non-profit or-ganisation that was created in 2007. The organisation helps facilitate treatment for children with congenital or acquired limb deformities.

Since it began, the founda-tion has helped fund surgeries for hundreds of children with the hope of giving them an equal chance at a better life that every child deserves.

Deformities“Private health care doesn’t

cover congenital deformities here,” Dr Sinclair said. “Hav-ing seen numerous cases of children born with these con-ditions and unable to afford treatment put an urgency be-hind creating this foundation.”

Marc Sinclair is a paediatric orthopaedic surgeon and works for the Children’s Medical Centre in Dubai. Sinclair cre-

ated and runs this organisation solely in his spare time. “We couldn’t do it without our net-work of doctors and sponsors. Medcare Orthopaedic and Spi-nal Hospital has been so helpful in Mohammad’s case,” he said.

On Saturday Mohammad had his third surgery in two years. Dr Hefti, his doctor from his first surgery, flew in from Basel, Switzerland to assist in his surgery. Dr Hefti is a paedi-atric orthopaedist that took on Mohammad’s case as pro bono work.

Every surgery costs more than Dh100,000. During each operation, implants are insert-ed called a ‘veptr’ — vertical expandable prosthetic titanium ribs. These implants stretch the chest and increase the vol-ume which give the lungs more space to grow.

This isn’t the last of his oper-ations. Every six to nine months he will require a surgery that will extract the old implants and insert larger ones to keep

up with his growing body. The process is a long and gruel-ling one, but eight-year-old Mohammad doesn’t show any signs of fear or weakness.

“He wants to be a policeman when he grows up,” his mother said. Rubina was overwhelmed with emotion and gratitude.

“They have been so caring. They’ve looked after him more than I could have imagined. We couldn’t be more grateful for the help they’ve given us.”

■■ Maryam Mirza is an intern at Gulf News

By Maryam Mirza Special to Gulf News ❝He’s a very cheeky boy. He has a very technical

mind. He knows how to work my phone better than me. As a person, he is extremely loving.”

Imtiaz Ahmad | Mohammad’s father

� Since 2010, Mohammad has had three surgeries to insert Vertical Expandable Prosthetic Titanium Ribs (VEPTR). Every six to nine months the devices will be taken out and replaced with new ones to support his growth.

VEPTR procedure at a glanceMEDICINE

Source: http://www.synthes.com ©Gulf News

This condition refers to a spinal deformity caused by vertebrae that are not

properly formed. It occurs very early in development, o�en in the �rst six weeks

of pregnancy and the cause is not known.

What is congenital scoliosis?

Rib-to-Lumbar LaminaIt attaches to rib and lumbar spine.Components are available in 220 mm radius.

Rib-to-ribAttaches to the superior rib and to the inferior rib.Components are available in 70 mm or 220 mm radius.

Rib-to-IliumAttaches to the rib and to the ilium.Components are available in 220 mm radius.

1. Patient procedurePatient is placed in a lateral decubitus position similar to that required for a standard thoracotomy.

2. Superior exposure

PA J-shaped thoracotomy incision is made without

disrupting the periosteum overlying the ribs. Skin

�aps are retracted. Superior rib is identi�ed to

be used as the superior point of attachment.

Bone spreaders in conjunction with vein retractors are used to gently distract the chest wall at the site of an opening wedge thoracotomy. Using the coated rod template, the distance between the superior rib and either the thoracolumbar junction or the chosen inferior rib is measured to determine the appropriate rib sleeve size.

ProcedureThese steps outline the procedure of installing the VEPTR devices. In Mohammad’s case three implants were inserted and are working to extend his rib cage and give his lungs room to grow. Every six to nine months, depending on his growth, a surgery is done to extend or change the devices.

Goals of the treatment- Increase thoracic volume- Obtain thoracic symmetry- Improve thoracic function- Equilibrate the thorax by lengthening restricted hemithorax- Avoid growth-inhibiting procedures- Maintain these improvements throughout the patient’s growth- Maintain spinal alignment - Allow spinal growth

Titanium made bars

An incision is made into the intercostal muscles above and below the rib where the superior cradle will be attached.

3.Distract chest wall and select rib sleeve

A fighter■■ eight-year-old mohammad

Abdur rahman is surrounded by Dr. marc Sinclair (right), his mother rubina (left), father Imtiaz Ahmed, and his younger sister Laiba at medcare orthopaedics and Spine hospital in Dubai.Pankaj Sharma/Gulf News

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