For the past decade, a Bend surgeon has been traveling to Africa and working with others to help children who were dying or living with brain and spine disease. They’ve now found a way to prevent the disease from developing in the first place.
“We know that without what we’ve done, there would have been 5,000 kids that would have had no chance,” Dr. Marinus Koning said recently.
Koning’s foundation, Reachanother, provides access to care for children born with neurological diseases spina bifida and hydrocephalus.
Let’s rewind: In 2008, Koning’s wife taught history with Semester at Sea. Koning had the opportunity to join her on the ship and travel the world. When they returned, he felt a calling to work in disaster care, which led him to a busy hospital in Ethiopia.
“It was a surgeon’s paradise because of the awful pathology. You know, the stuff that you see there, it’s really horrible, but it’s fascinating to a doctor,” Koning said.
So much so, he got his twin brother, a surgeon from Holland, on the case. They noticed babies with abnormally large heads and started asking questions. The babies had hydrocephalus, which is essentially extra fluid in the brain.
“Then I asked the surgeons about it. They said, ‘Well, there’s no room,;” Koning said. “‘We have more important things to do.’ The pediatrician said, ‘Well, what are you worried about them for? They all die.’ And I said, ‘Well, wait a minute, — where I come from, they don’t.”
In the United States, parents take their babies to the doctor to routinely be checked, which includes a head measurement. If the circumference goes above the percentile line, doctors know the child may need to see a neurosurgeon. In the case of hydrocephalus, surgeons put a drain into the brain to remove excess water. If this surgery is not performed, the baby’s health deteriorates.
“The inside of the brain swells up, and of course when the bones fuse, the brain gets crushed against the skull,” Koning said. “Then ultimately, the children die or they are severely mentally retarded.”
Now, in the case of spina bifida, there’s a wound on the back with abnormal nervous tissue exposed to outside elements, including bacteria. If treated properly, 70 percent of these patients can learn to walk.
Koning and his brother came up with the idea to raise money to pay neurosurgeons to work weekends. Now, the foundation gives each surgeon $25,000 worth of supplies.
In the last 10 years, they’ve trained 32 neurosurgeons, and have recruited local health care workers in their mission. Doctors now perform up to 15 of these surgeries in a single day.
Another challenge is educating parents in their native tongue. Reachanother created a handbook to help with that.
Koning said, “They were fit to be tied. They thought their child was going to die — this was the last time they were ever going to see their baby. And we explained to them, ‘No, no, no, that’s not going to happen. Your baby is very likely to survive the operation.'”
You might be wondering why so many babies are born with these diseases in Ethiopia. The answer is folic acid deficiency.
“We’ve known since the 1970s that folic acid, which is a B vitamin, is what the mother needs right after conception for the baby to develop normally,” Koning said.
The problem is, the window in which the disease develops is often before a woman knows she’s pregnant — three weeks or so after conception.
” It’s too late if you start taking the pills when you’re pregnant,” Dr. Koning said.
So he wants to reach women before they’re pregnant through food fortification. You might not know it, but you eat folic acid in flour. Just check the label.
“So we unknowingly eat enough folic acid to prevent this problem,” Koning said.
The U.S. government has been doing this since 1998. It brought the rate of spina bifida cases down by 80 to 90 percent. The nation has five cases per 10,000 pregnancies. But in Ethiopia, it’s 130 per 10,000.
The ministry of health has asked Koning and his foundation to put together a task force to bring folic acid to the country. But most people farm their own food, so fortifying flour is not an option. His solution is to fortify the only thing Ethiopians consistently buy — salt.
“If this epidemic can be solved, and we think that with the plan that we have, within two years or so we can see the spina bifida incidence drop by half,” Koning said. “That would save 20,000 babies per year.”
Koning said he and his team will continue to develop, research and work with the government until food fortification is approved. For now, they’re working to distribute once-a-week folic acid pills to 50 million people across the African nation.
“You come back, and your life is enriched, and it’s different. And your views are changed, and you understand the world better, and it just makes you a better person,” Koning said.
“They are really beautiful people, and I want to help them,” the surgeon added, the emotion in his voice and eyes making clear the impact this effort has had on his heart and his life.
The Central Oregon team is meeting with the Ethiopian government this week.
For more information: http://reachanother.org/