Tulu was in traction for 3 months in Ghana, then had surgery. Look at the
difference, compared with his dad now. And he feels great!
Bizuayehu (“I see a lot”) is a remarkable and courageous 23 year old woman from Mojo, about an hour outside of Addis Ababa. Her mother noticed that her spine was deforming when she was a baby. She took her to 2 hospitals, without any help.
As her spine deformed, in school she was shunned by other kids, and called hunchback (“gobata,”) a terrible insult. Her parents died when she was 14, and her sisters also gave her very little support. Despite this, she was able to graduate from high school and study computers for 3 years. Unable to find work, she lived in a mud hut, read a lot, and found inspiration in her Christian faith.
About a year ago, when her sister left to work in Dubai, Bizuayehu took a bus to Addis Ababa seeking help. A kind person offered her support and a place to live, and she was evaluated in our spine program.
We found a very complex deformity – her spine had a U-turn and an angle of over 150 degees. Moreover, her spinal cord was pierced by a piece of bone: technically, her MRI found scoliosis plus diastematomyelia, lipoma, and tethered spinal cord.
She travelled to Ghana in late 2013. She was put into traction for several months: Dr. Rick visited and took these photos. Later in Ghana, she underwent surgery which involved fusing from the 5th thoracic vertebra (T5) to the pelvis, as well as complete removal of her first lumbar vertebra (L1). She had 5 rods and 18 screws put into her spine. She had a slow recovery, complicated by temporary weakness in her left leg.
She will now return home, look for work, and try her best to make friends, find a job, and rebuild her life. Bizuayehu, we salute your courage!
At a high level, it can feel that way! There are multiple players, and everyone has an important part to play. Recently, this worked superbly well, and we were able to really help our patient Tizita.
Tizita was in high school a couple of years ago, and happened to drop a book. She bent down to pick up the book, and the librarian noted her twisted spine. The librarian is the father of one of our patients, and suggested that she visit us.
Tizita has had a difficult life, with a progressively twisting spine. Plus her family had its share of problems as well. Tizita’s Christian faith has been a source of comfort, and she constantly tells herself “God has a plan.” She sings in her church choir. She writes poetry. For years, when shopping for clothes, she would ask her mom “does it match me?” She was really saying “Does it emphasize my spinal deformity?”
Tizita’s mom advised her to go to nursing school. Tizita considered this, but then chose surveying!
We evaluated Tizita, and diagnosed scoliosis, with a double curve – 108 degrees on top, 95 degrees on the lower half of her spine. In America, a single curve of 50 degrees gets appropriate surgery.
Over a year ago, Dr. Rick was contacted by Diane Curley, a Long Island nurse who is Director of Clinical Resources at Catholic Health Services and a volunteer with Operation Hearts and Home, a Long Island based charity dedicated to improving the lives of children in Ethiopia and Ukraine. Diane thought that Long Island doctors could help our patients. She introduced us to “The Long Island Spine Specialists,” who expressed interest in helping our patients. Rick, a native of Long Island himself, met with them at their Commack, NY headquarters. After long email exchanges, they chose Tizita to operate on, at no cost.
Earlier this year, Tizita flew to Long Island and was housed by Mae, the administrator of the group. Dr. Laurence Mermelstein and his partner, Dr. Hargovind DeWal operated at Good Samaritan Hospital in West Islip. They were assisted by plastic and reconstructive surgeon Dr. Michael Dobryansky, of the Long Island Plastic Surgery Group. Medical device company Medtronic donated the implants, and SMS donated the intra-operative spine monitoring.
In a long day of surgery in May, the doctors put in 2 rods and 24 screws. Tizita recovered well and even had a “ladies night out,” where 10 women went by limo into Manhattan to an Ethiopian restaurant. Tizita has returned back home to Ethiopia, healing and looking forward to resuming her surveying studies after the summer rains.
All of us want to thank Dr. Mermelstein and everyone in Long Island who helped Tizita. Dr. Rick commented “As a native of Long Island, it makes me especially proud that Long Island folks have come through. Not only did they provide medical care, they opened their homes and their hearts.” Long Island – we love you!
Thank YOU, Mark Zuckerberg! Let me tell you how you are saving the life of Befekadu, a 24 year old Ethiopian orphan.
Befekadu is simply an amazing fellow. He has had a progressive, severe spinal deformity (scoliosis) since he was a small boy. Several doctors told him there was no treatment available.
At the age of 15, when he was in 8th grade, both parents died. This left him as the sole support of his sisters – Lamerot, 8, and Ayalnesh, 6. Befekadu stayed in school, but worked full-time as a timekeeper and storekeeper for a local construction enterprise. Till this day they live in a simple rented house with dirt floors and 2 light bulbs, paying 25 US cents rent per month.
Befekadu graduated in the top 20% of his high school, then moved to Addis Ababa and studied public administration at Addis Ababa University, the Harvard of Ethiopia! And all this time, he has been the sole support of his sisters.
On Jan 30, 2010, Dr. Rick was walking in the street near Addis Ababa university and saw Befekadu walking on the roadside. He saw Befekadu’s spinal deformity and told him “I think I can change your life,” and asked him to join us in clinic. In clinic we diagnosed a spinal angle over 180 degrees, and a 75% reduction in lung function. At the time, we were not yet using long-term traction, and someone else in the room told Befekadu that he was too-far gone for surgery. He did not return for follow-up.
Recently, we found Befekadu’s medical records and realized that he’d be a great candidate for traction. But none of his phone numbers we had were working. What could we do – this was a life-and-death situation. Reading his social history, we noted that he was a university student. We turned to Facebook, and within an hour, had located his Facebook page! We found that Befekadu lives in a town north of Addis Ababa and works in a government transport office. We sent him a message, and within days, he was in our office for reevaluation.
He’ll be departing this summer for Ghana for several months of traction, followed by corrective surgery. He is now busy saving money to support his sisters in his absence from Ethiopia, which could be up to 8 months. And he said to us today “Without Facebook, I’d be without hope.” So, Mark Zuckerberg – thank you for Facebook!
Photos and story used with full permission.
Akewak walked into our clinic at our JDC SPINE PROGRAM a few years ago at the age of 12, and said to us, in English “I need your help, I have a bad back.” “That’s what we’re here for,” Dr. Rick replied with a smile.
Akewak had a lumbar kyphosis – a congenital fusion of several bones in his lumbar spine. It’s quite rare, but we see it every year. On exam he also had unequal shoulder blades, he was born without a thumb, and he was born with an extra blood vessel in the heart which normally closes at birth, a PDA (patent ductus arteriosus). We diagnosed a condition called VACTERL syndrome. At the age of 5, he had heart surgery to close the PDA. After the surgery, he was still weaker than his friends, but played still attempted to play sports with them.
It all seemed to make sense. But when Dr. Rick carefully examined Akewak with a stethoscope, he thought that he heard a PDA. He said to his
assistant “I have no idea what I’m listening to – it sounds like a PDA, but that’s been closed.” Akewak was referred to the best echo doctor in Ethiopia. He returned with an astounding result: indeed, he had a huge PDA (13 mm), plus “inadvertent ligation of the left pulmonary artery.” When doctors went to cut the PDA, they cut the pulmonary artery instead! Akewak was living on 1 lung. He had potentially dangerously high blood pressure in his lungs. It might even be too late to operate! And what might be done? We could only speculate.
Akewak walked into our office thinking that his back was his main problem. Dr. Rick sat down with Akewak’s parents and explained that his main problem right now is his heart – botched surgery truly threatened his life. His father, a policeman, said “Doctor, we are Christians. We believe God will help.”
We contacted physicians all over the world on his behalf. Children’s Hospital of Colorado accepted him for free treatment. We brought him to Denver. After intensive testing, doctors found that he was operable. After great discussion, surgeons decided on a single surgery. They removed the PDA, and then, in a great surgical feat, constructed a new pulmonary artery out of the pericardium (outside lining of the heart). A separate team stabilized his spine. He lived with a wonderful host family. And attended the Jewish Dayschool. And he gave the first gift at a major fundraising event.
Akewak returned to Ethiopia to heal. But his spine deformity was greatly increasing. Later, he was sent to the FOCOS Hospital in Ghana. In a delicate 6.5 hour operation, Dr. Boachie completely removed 3 vertebrae (L1-L3) and instrumented T7-S1.
Akewak is now back in Ethiopia. His heart is healthy. His spine is straight. Now at the top of his high school class. Dr. Rick recently told Akewak “Often in life, people never get a second chance. God has given you two new chances. Do something great with your life.”
Akewak’s name means “Gift of God” in his Oromo language. “My life is amazing,” he replied, “I will become a doctor.”
We recently had the visit of newlyweds Jamie and Zvi Kresch. Zvi, an international ophthalmologist, was in Ethiopia teaching and helping upgrade skills of local eye doctors. We asked if they might be able to help us by taking time to photograph some of our village projects.
Thus, one recent Friday, they found themselves in a pickup truck, pulling into the hot, dusty village of Gorgor, 25 miles from the Sudan border. The center of the village has a primary school with a tattered Ethiopian flag flying bravely, and many round tukuls/huts made of sticks and mud.
This village of 200 families, which had 1 well – 1 inadequate well, which goes dry, where women wait for hours to fill water containers, and where fights break out over water.
Knowing that JDC has built over 200 functioning wells in Ethiopia, a friend named Moshe funded a new well here, in honor of their wedding. As they pulled into the village, they saw 2 wells – the old and the new, with a line of donkeys carrying gerry-cans of water, and both men and women pumping the water from the new well.
Noting their arrival, the villagers started making speeches, thanking them for the well. They were embarrassed – they were the photographers, not the builder and not the donor.
And then the sign came out announcing that this was actually a wedding gift, which they learned about nearly a year after their marriage.
Jamie commented: “We thought we were doing a favor and going into the countryside, we were amazed to learn that we were actually visiting our most unique wedding gift.” Zvi used the opportunity to encourage all the kids to study hard and do well with their lives. And Moshe commented “This is a gift which keeps giving – a lot nicer than candlesticks or new dishes. Every day it’s helping keep hundreds of people alive.”
Munira is a 10 year old girl who was carried into our office on her mom’s back in July, 2013. The family of 5 lives in a mud house without water – they use a neighborhood latrine. She was newly paralyzed. We pieced together the story: she had TB of the spine which had not been treated, she fell off a chair, and her unstable spine damaged the spinal cord. She could not walk at all. On exam she was hyperreflexic, had + Babinsky response, but still had some feeling in her legs as well as some knee movement, but no toe movement. We immediately did CT scan, MRI, and started her on TB treatment. Her mom delivered her to the airport, piggy-back the following week. She flew to FOCOS Hospital in Accra. At FOCOS Hospital, she had 10 weeks of traction, and then major surgery and lots of physical therapy. Now she is delighted to walk on her own, using a walker. She has the rest of this year to recover, then restart school. Her goal? To become a doctor! Congratulations Munira, we admire your courage. Story and photos presented with permission