I started off the morning shadowing Prof (Dr. B) on his 7 am rounds. Here are the cases that I found most interesting:
- Edmond: Edmond is a six-year-old boy whom a surgeon has kindly decided to sponsor. He has a spinal neurofibroma, or a nerve sheath tumor (“soft mass”), accompanied by kyphosis. Kyphosis is an “exaggerated rounding of the back” that is frequently treated here (Mayo Clinic). His curvatures measure 88 and 80 degrees in his high thoracic spine. Today Edmond was fitted for a halo to put him in gravity traction. Traction uses a weighted halo around the head attached to an upward string-type to lessen severe curvatures by decompressing the spine while the child spends time in a wheelchair fitted with the contraption. I got to hang out with Edmond later, and with the help of a bilingual nurse (many of the children speak English but he cannot), I learned that the energetic boy is a little shy, but likes to play soccer and run around.
- Thelma: Thelma is a delightful and very tiny three-year-old girl from Ghana. Thelma’s parents do not make enough money to afford the extensive treatment she needs and you can sponsor her surgeries here: Support Thelma. Thelma came to FOCOS with such severe congenital kyphoscoliosis that her pulmonary function was extremely compromised and she could barely breathe. Although Thelma still faces many obstacles, Prof is confident that they have made progress in her treatment through traction (her curve has already reduced from 160 to 70 degrees) and that they have saved Thelma’s life with this process. Prof admitted that if Thelma was admitted any later, she likely would have died. I learned a lot about the difficulty of traction treatment in small children by observing Thelma’s case. Thelma’s halo started around 9.2 kilos and is now up to 10 kilos, but Prof wants to see her work up to about 13 kilos. In addition to the need to increase halo weight, Thelma cannot undergo her first of multiple growing rod surgeries until she gains weight. She is currently using a GI tube and working with the nutrition department to “just eat all day”.
- Another patient that we saw was a seventeen-year-old male from Sierra Leone, who also underwent surgery later on. The patient had such severe kyphosis (211 degrees) that his thoracic spine had cross over the lumbar spine, looking like an S from his right side where the top “C” half of the S had curved outward so much so that parts of it were below where the normal lower half of the spine was once alone. This extreme condition caused destruction at the apex and required a dangerous procedure involving resecting the spine just posteriorly, as the risk would be too extreme adding in an anterior approach.
Next I joined the doctors and research staff for their morning conference, where each member presents their respective cases complete with blood levels, x-rays, MRIs, SRS-22 Patient Questionnaires and FOCOS Risk Scores, and treatment plans. The cases were fascinating. First we discussed the patient from Sierra Leone that I detailed above, as his surgery was just a few hours later. His doctor shared x-rays and curvature measurements from each month of traction. At the 5 month traction mark, the patient’s progress plateaued at 116 degrees, which is an astounding improvement from his original 211 degree kyphosis.
I also learned more about the case of a thirteen-year-old Tanzanian male with early onset scoliosis, who I had seen earlier and was also scheduled for surgery. The patient had previously been unsuccessfully treated for Pott’s Disease (spinal tuberculosis), as well as braced with no success. After six weeks in halo traction (of a total of eight), this patient’s largest curvature (he has three) decreased from 96 to 61 degrees. The surgeons discussed that it was safest to do the procedure just posteriorly, but that the limiting approach would require them to really affix the apex with multiple screws to prevent rotation. Prof detailed making “the spine so rigid that it cannot turn”. It is rare for a spine to be able to re-curve against so many pedicle screws at multiple fixation points. The doctors also discussed potentially using wires in the procedure for further stability. This patient’s procedure will only require one rod, because his 57 degree kyphosis is “not so bad”, or at least in comparison to what is typically seen at the FOCOS Hospital.
The discussion then moved to discharged patients, and it was truly incredible to see the progress that they had made. One patient was a young female with early onset scoliosis who had a growing rod implanted through her entire thoracic and the majority of her lumbar spine. The patient’s curvature was reduced from 109 to 19 degrees! Next up was a seven-year-old female with early onset scoliosis who had a Shilla growth-guided procedure modified by the FOCOS Hospital known as FBGM, or FOCOS Bidirectional Growth Modulation. Her spinal hardware included a hook and reduced her curvature from 60 to 24 degrees. Adult patients discharged included two laminectomies for lumbar canal stenosis, a left total knee replacement, and a procedure for bilateral knee osteoarthritis.
In the afternoon, I met with Justice, the Manager of the Outpatient Department (OPD). The clinic is open five days a week by appointment only, and each day has specific specialists. Some days are for orthopedic surgery, some are specifically for pediatric orthopedic surgery, and others are for neurosurgery. Some of the doctors are permanent FOCOS employees, while others are visiting doctors that come on certain days each week and receive a portion of what their patients pay. Permanent staff includes specialists in neurosurgery, orthopedic surgery, and general and family practice, as well as residents from a nearby medical school. The clinic also includes anesthesia clearance for pre-op patients. Justice handles all of the billing; each patient undergoes a financial assessment to see what they can afford. People are only charged reasonable amounts that they can pay (some appointments are “virtually free”), and Justice takes care of patients in severe financial situations by finding them sponsors (Click here! Anything helps!). In Ghana, few people have insurance, and there is no system equivalent to US Medicaid and Medicare. Many patients come from outside of Ghana through partner organizations and other sponsors. Justice talked about how severe some of the cases from Sierra Leone are, especially because of how financially troubled the nation is. Ethiopian patients are also brought here often through the American Jewish Joint Distribution Committee. Prof will actually go to Ethiopia next week, as less acute care is needed for this trip and the medical professionals there will be able to handle post-op care.
What I found so amazing was how hard the doctors work with patients with existing diseases to allow them to be safe for surgery. Many patients come in with conditions like diabetes or hypertension, but the doctors work with their patients and the pharmacy to track their progress until they are healthy enough to have their orthopedic deformities fixed. Only two surgeries have had to be cancelled in all of FOCOS history due to health, and the patients had severe cardiac disease and a cancerous lesion. FOCOS distributes and analyzes surveys every quarter given to patients regarding the quality of the clinic (wait time, doctor’s performance, cleanliness, etc.). I was so blown away that this organization, which takes incredible measures for those in need, cares so much about their patient experience. No doctor in the US would ever ask me if I minded my wait time! As Justice and I discussed the clinic’s quality, I couldn’t help but notice that on top of everything, Spongebob was on for the children in the waiting room. The hospital has two ambulances, which are mainly used to transport severely disabled patients. As per protocol, the ambulances stay at the FOCOS Hospital on surgery days in case of emergency, though they’ve never been used for this purpose.
Today was incredibly moving and informative. I am excited to spend more time with the exceptional doctors and brave children and cannot wait for what the rest of this journey has in store. Thanks for reading, and please stop by FOCOS’s Sponsor A Patient Page!