Selam: A mother’s prayers are answered

DSC00783As a physician caring for some of the most deformed spine patients on the planet, we don’t always get the chance to give good news.  In fact, one of the most difficult things our team did last year was to meet Selam’s mother.

We knew that 16-year old Selam was a high-risk patient. Without surgery, she would have become paralyzed, for sure.

Let me back up for a moment. Over a year ago, Selam came to us from her home in Ayer Tena on the outskirts of Addis Ababa. As a 4 year old, her mom was giving her a bath and noticed that her back had a bulge. This continued to get progressively worse. She went to many holy water sites, hoping the healing powers of the holy water would cure her and straighten her spine. No help. She had multiple visits to Zewditu Hospital’s neurosurgery department. Doctors there contemplated operating on her, but her mom would not approve. Her mom went to church every day to pray for her daughter. Selam continued to get worse.

Selam continued school without missing a day. But she was teased about her back, and became increasingly self-conscious. She did not get together with friends, she simply went to school and returned directly home.

When she turned 13, her father died of heart disease. This put great stress on the family.  Selam became increasingly self-conscious, and stayed inside.

But her life changed. Her mom was in a taxi, and 2 women were talking about a patient who had successful spine surgery – in Ghana. Her mom learned that Dr. Rick was the doctor – and he  practices nearby. She brought Selam to our clinic the very next day.

We realized Selam was a critical patient – Her spinal angle was 205 degrees! How is that possible? Her spine is shaped like an alpha! Without dangerous surgery, she was sure to become paralyzed. She was evaluated by Dr. Boachie – he ranked her “1+” – our most urgent rating.

We sat with her and her family and explained the potential benefits – and potential risks. The real risks were paralysis, incontinence … and even death. The family said a prayer, and signed permission. We sent her to Ghana, where she went into traction for 4 months.  She improved, and her spinal deformity improved.

But a terrible situation developed – she became traction-dependent! When she slipped out of her traction apparatus, she would become semi-paralyzed! We had never had this happen before. We found no reports of this in the medical literature. An attempt to place her on the operating table without neurologic compromise was not successful.

Dr. Boachie phoned from Ghana, to discuss this in detail. “Rick,” he said, “her family must be informed. They must know that she’s at great risk no matter what we do.

There is a very high risk of paralysis. Her mom must be informed, and her mom must sign permission again –  under these circumstances. ” We asked her mom to come in, along with a translator for her native Gurage language. We explained the predicament – Selam can’t stay in traction forever. If she stops traction, she is likely to become paralyzed. If she gets surgery, there’s also a significant chance of paralysis.

At first her mom was against surgery. She wanted Selam to simply return home to Ethiopia, immediately.

“Now she can move,” she said, “who knows about later?” The decision had to be hers, not ours.  We phoned Selam in traction in Ghana, and they had a long, private talk.

Her mom returned 20 minutes later: “She needs the surgery,” her mom said, “I’ll sign.” We drafted a document in 2 languages which we read to her mom. Her  mom – illiterate – tearfully signed with her thumbprint and a prayerThen her mom spent several full days in church praying for Selam, asking God “for 1 big favor.”

In late 2015, Selam underwent surgery in Ghana, while still in traction.  She had spinal fusion from T1-L1, and removal of 2 bones – T7 and T8. She had thoracoplasty and local bone graft, and a mesh cage put in.  She had loss of some neurologic signals during surgery.

But she survived, with some neurologic deficit:  after surgery, she needed knee braces and a walker. Selam was determined to walk on her own, and practiced physical therapy for hours a day with amazing determination.

A few months ago, she flew back from Ghana with 10 others. She tearfully embraced her mom at the airport, and proudly and slowly walked on her own with a walker. She has continued to get better.

We phoned her this week, and she said “I don’t have words to explain how happy I am. Sorry, I have to go, I am out with my friends now and they are waiting for me.”

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Meet Natnael, miracle boy!

DSC08256Natnael, 18, hails from a family of 7 in Addis Ababa, Ethiopia. He is the youngest of his four siblings, 1 sister and 3 brothers. They live in a mud house in a crowded district in Addis Ababa known as Hanna Mariam.

Natnael lived the first four years of his life as a seemingly healthy child. His life changed forever one afternoon in the front yard of his family’s small house. While his mother was giving him a bath in a large bucket, she noticed a bump on one side of his back. She thought nothing of it for a long time and let it be. After a year, the issue could no longer be ignored – the bump had grown a tremendous amount and turned into a hump.

This prompted his parents to take Natnael to a hospital. Given their poor financial situation, they decided to settle on an affordable option; the huge government teaching hospital known as Back Lion Hospital in downtown Addis Ababa. The family visited this hospital countless times over the next three years, enduring hours of waiting before being seen by duty doctors and their supervisors. Between the ages of 5 and 8, Natnael and his family were told that his problem was too severe, and that he could not be helped in Ethiopia. He was told there was no treatment anywhere in the world!

His parents were quietly advised to cherish the remaining moments of Nati’s life. Doctors predicted that this child with a deformed back was also predisposed to developing pneumonia and tuberculosis, and had only months or a few years left to live. This was the only advice that Natnael’s family received from this hospital.

Desperate and out of options, Natnael spent the next 8 years of his life seeking out faith healing. Accompanied by members of his family, Natnael visited countless churches and holy water sites, where he was subjected to multiple prayers and baptisms by holy water. This gave them some hope, but Nati’s deformity continued to progress. His family
ran out of options.He weighed 70 pounds, and had a BMI of 12.

During this daunting time, his mother described Natnael as an incredibly optimistic child. Natnael did not miss school or many activities during his childhood. He attended all grades of public school regularly and he was able to make genuine friends
who were able to look past his condition.

However, being the bright child that he was, Natnael still felt the burden of his deformity in the form of the watchful eyes of the average passerby. During their many trips seeking a solution, he felt the people in the streets staring at him at him and shaking their head in sympathy. They would cross-themselves, a way of saying “May God keep this from happening to me.” This caused him to become very self-conscious.

It seemed as though he would spend the rest of his life this way, however, fate had another plan for this boy. One day, when his mother was running errands, she met a woman from Debre Berhan, north of Addis Ababa. During their short conversation, the woman spoke about an American doctor in Addis Ababa who saved the life of children with spinal deformities.

To the mother, this was just another word of mouth suggestion by another sympathetic person. However, being desperate, she chose to look into it, not knowing that this would be the opportunity she has been searching for, for years, to save her son’s life.

She first came to our clinic on March 14, 2015. Rick diagnosed severe idiopathic scoliosis, with an estimated angle of 200 degrees deformity from front to back (AP), 160 degrees on the side (laterally), compounded by a 48 degree ATR (angle of trunk rotation, the angle between the 2 sides of the back). It was one of the worst spines he had ever seen. He wrote “BFD” on the record (New York English for “big deal”). The deformity caused Nati to lose 71% of his lung function. His entire “FVC” (forced vital capacity, the total amount of air he could breathe out) was .91 Liters, about 3 cans of Coke! At 8000 feet above sea level! Dr. Boachie ranked Nati a 1+, our most urgent rating.

Another “chance meeting” would seal Nati’s fate. He was in clinic with us on Oct 30, 2015 when a delegation from the Max and Marian Farash Foundation of Rochester, NY visited. Dr. Rick mentioned “boy this kid needs surgery, I wish I had funding.” Immediately, the Farash trustees said “You have the money now, do what he needs.”

Nati travelled to FOCOS Hospital in Ghana less than a month later. After evaluation he was put into 4 months of long-term halo traction. On May 10, he underwent 6 hours of surgery, still in traction, led by Dr. Boachie. Specifically, he underwent posterior spinal fusion from T2-L4, Smith- Petersen osteotomies, thoracoplasties, concave ribs osteotomies, discectomies and bone grafts. His post-surgical course was complicated by low blood pressure, but he pulled through and is doing well.

Nati returned to Ethiopia last week, and will spend the summer recovering, then restart school. His goal: “to become an engineer.” With 4 rods and 18 screws in place, several inches taller and 26 pounds heavier, we’re sure he’ll make it!

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Aliyah Update: She’s Walking!

Aliyah is still in traction (an apparatus used to prepare her spine for surgery) but is able to walk with assistance!!!

– Dr. Hodes

Latest news about Aliyah + Matching grant still available

Our nurse Lemma personally brought Aliyah to FOCOS Hospital in Accra, Ghana early this month. (Read her story here.)

In addition to her z-shaped spinal deformity and NF (neurofibromatosis), she was also found to have Cor tritriatum – an extra heart atrium!

She has been in traction for over 2 weeks now. She is stable and doing well.

We’re hopeful that she will start to improve.

She is not fully funded, and our matching grant is still in place. We need your help– please donate today!

Thanks so much for your help,

Dr. Rick and the JDC-Ethiopia spine team

The JDC is a 501(c)3 organization, and all donations are tax-deductible.

New emergency appeal – with matching grant: Please – help us save Aliya’s life!

URGENT: We need raise $20,000 right away to save a young girl named Aliyah from becoming paralyzed. A wonderful donor is matching all donations up to $10,000. Please help us save Aliyah– donate today.


Aliyah first came to us in April as a paralyzed 9 year old girl. She returned a couple of weeks ago on the Saturday before Ethiopian Orthodox Easter. We usually close that day so our staff can prepare for the holiday. It’s a good thing we stayed open. While most of our Christian patients stayed home, we had plenty of Moslem patients who came in. Last patient of the day? Aliyah and both parents.

IMG_6422They live in the Silte region, 3 ½ hours away by car, followed by a 4 hour walk. When Aliyah became paralyzed months ago, both parents moved to Addis Ababa and rented a room in Akaki, outside Addis Ababa. Their rent? $5 per month. Her mom is 9 months pregnant at this moment, due any day. But both parents were at her side, absolutely dedicated to her health.

Aliyah has a genetic condition called neurofibromatosis – NF for short. About 4% of our spine patients have NF. She became paralyzed about 6 months ago. She was admitted to the university hospital for 3 weeks and got somewhat better. On her initial exam with us in April, she had signs of upper spinal cord compression – her big toes pointed up on Babinsky test. And she had super-active reflexes.

In recent weeks, she has had some return of feeling in he body and regained the ability to control her urine. I drove her myself to scanning center an hour before it closed for Easter. She is in a super-precarious situation. Her spine is dangerously unstable – it has a Z-shaped deformity, which we sometimes see in our NF patients. Even though she is a bit better, Dr. Boachie advised:

“Rick, this girl may be OK, but not for long. Her only chance of improving is immediate traction and later stabilization. But no guarantees. It is almost a dislocated spine.”

When I told a visiting physician who saw her with me that we’ll need at least $20,000 to try to save her, he said: “Rick – I’m in Ethiopia, and now God has put us together. I’ll match her donations – dollar-for-dollar – up to $10,000. Tell your donors.”

So now I am asking you all to generously donate $10,000 for her treatment in Ghana. As Dr. Boachie said, there’s no guarantee of success. But without our efforts, she will become paralyzed.

With gratitude,

Dr. Rick

story and photos used with full permission

The JDC is a 501(c)3 organization, and all donations are tax-deductible.

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The JDC is a 501(c)3 organization, and all donations are tax-deductible.

Thanks to Rotaplast, these kids are fixed!

At this moment, 10 million Ethiopians are threatened with drought and food insecurity. JDC’s response is to provide  150,000 packets of PlumpyNut, a peanut-based food supplement, and to dig 5 wells in drought-affected areas of Gondar.

Dr. Rick was in Gondar to deliver the food. After his team departed early, he was the only physician for 100 miles! During nutritional screening in the village of Hamusit, 3 babies showed up who had cleft lips and palates. These babies are at higher risk for nutritional problems and developmental delay. Rick took photos,  recorded their information, and told Zemene, the  head of the health center “I’ll contact you if I ever hear of a cleft team coming.”

Rick returned to Addis Ababa. Just  3 days later, Dr. Angelo Capozzi, founder of Rotaplast in San Francisco, stopped in to say hi – to ask for patients. In the 24 years since they were founded, Rotaplast has operated on over 17,000 kids worldwide!

Rick relates:

“I immediately phoned Zemene,  the health center director – phone was switched off. I called every hour – no luck. At 4PM, I stepped into a corner and said a prayer, asking that Zemene turn his phone on,  so we could help these kids. Just 30 seconds later, I got a text from the phone company – the phone had just switched on. Zemene went to work to round up the kids.”

By Monday, he had located them. They had no funds to travel 500 miles to the capital. Rick was in the middle of clinic at Yekatit 12 Hospital, when he handed a $100 bill to his assistant, with this instructions: “change this, and wire it to Zemene in Hamusit for travel costs.” Then ensued multiple problems – one bank would not accept the money, there was no electricity in Hamusit, there no internet access, someone tried  to inflate prices and skim money. Finally, we got Zemene on the phone: “borrow this money right now, get them onto a bus today, and you’ll pick up the money in the morning, when the bank is functioning.” The group travelled from Hamusit to Bahar Dar to Addis Ababa, arriving on a Thursday morning. We admitted them to the CURE Hospital, and the following day they underwent surgery by Dr. Angelo and his team – the last 3 patients they operated on.

After surgery, they moved into Mother Teresa’s Mission nearby. The  husband of one of the women slept on Dr. Rick’s living room couch for 10 days while his daughter healed.

Today they phoned – they’re back in Hamusit, the kids are fine.

Thank you Rotaplast – your help, and fantastic timing, saved these kids.

 

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Why are Tilahun and Abel smiling?

Being in Ethiopia so long ​has given my team and I great inspiration. The courage of my patients never ceases to astound us all. And sometimes, we are able to help patients unexpectedly. ​

DSC01346.jpgSo when a boy needing a corneal transplant walked into my office on a Friday, I told him that I am not an eye doctor. But I took a photo and immediately sent it to my friend, Dr. Geoff Tabin, a renowned ophthalmologist in Utah. To my surprise, Geoff wrote back “Rick, I arrive Sunday with fresh corneas, happy to help.” 4 days later, this boy had a new cornea!

My long-term spine patient Fekadu is also blind. B​oth his spinal deformity and blindness are due to tuberculosis as a child. Fekadu has overcome a lot, ​has a degree in history from Addis Ababa University (the Harvard of Ethiopia), ​and managed to become a teacher. He asked me if I could get him a braille typewriter. I have no sources of typewriters, but I put that request into a commencement speech. Someone who heard the speech contacted me, and put me in touch with the wonderful group Volunteers of Vacaville,​ in California. VOV donated a typewriter, which we passed on to Fekadu. He is shown with a couple of our volunteers.​

And now, let me introduce Tilahun. Tilahun is a boy from Alamata in Tigrai, ​who travelled hundreds of miles across the country to a  Addis Ababa, for treatment of a terribly enlarged and painful tibia, just  below his left knee. ​We arranged his amputation, and sent the tumor to the University of Rochester in New York for detailed pathologic analysis. The diagnosis: a cancer called Ewing’s sarcoma.

We found medicine, and arranged chemotherapy. ​Tilahun underwent 17 ​grueling cycles of chemotherapy. He vomited like hell, he lost his hair. We encouraged him as much as we could – we’d get him movie tickets – he planned his outings for ​the ​weeks where he would not be vomiting. His favorite movie ​is​ The Walk, which in 3D is simply spectacular.

Tilahun is now cancer-free. Now, Tilahun’s goal is to get an artificial leg, and return to school.  We​’​ve put in the order for the prosthesis​. I sat down with him the other day, to discuss his life. “What do you want to be when you grow up?” I asked.

Tilahun looked at me, and he burst out crying.  I was wondering if he was worried​ about his cancer returning, or he was ​missing his family up in Tigrai​, or concerned about missing school. But this kid astounded us all. He composed himself and said “I feel so bad when I see blind people here – they have such a difficult life. Our​ streets have holes they can fall into. I want to start an organization to help them.”

A few days later, my blind patient Abel came to see me. Abel comes from a remote area of Gojjam province, and was brought to Addis Ababa​ as a child, ​with promises to send him to a blind school. Instead, someone put him up to begging on the street, until Abel was able to escape. A​bel overcame that, and returned to school. Several years ago, with assistance from a Hawaii Foundation,  we brought him to the Colorado School for the Blind where he underwent intense training in blind skills. Abel is now studying social work at Addis Ababa University.

Abel was recently walking on the street here and fell into a hole, injuring his back. And he broke his cane. He came to me to get his back checked, then asked if I happened to have a cane. “Actually, I buy canes on Amazon.com. I ​always ​keep​ a couple at home,” I said, “blind people ask me for canes​.”

I decided to introduce Tilahun and​ Abel, and let Tilahun ​deliver the cane. ​We arranged a meeting, and both ​Abel showed up at clinic​ last week​. Abel was carrying a brass bell from Colorado, reading “Take Charge with Confidence.” T​ilahun and Abel​ became instant friends. And Tilahu gave Abel a new cane. “Tilahun,” Abel said, “for me to get a new cane – it’s like a new car!” Thank you so much.”  DSC01344.jpgIMG_1522.jpgSpTB Fekadu Wolde-Tensai (Blind) 8-2010 - 02.jpgTypewriter 8-2013.jpg

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