Linda Johnson’s journals from Ethiopia. See part 1 for more information.
Ethiopian Journal 6-9-11
The past 48 hours have been incredible, challenging, and very emotional for me. The best way I can think to describe it is
when deepest dreams meet natural gifts to become reality. More of an explanation is in order.
The pace of things has been picking up here, as we have gotten very organized and the information we have been gathering has begun to coalesce around a very different model for the program proposal. In the last 24 hours we received feedback from two physicians that has
allowed us to identify that we can fund a hydrocephalus surgery for probably no more than $125.00 US dollars. This
includes paying the nursing staff and physicians to work on Saturday, and getting donated equipment and supplies (shunts). The hospital would donate the room and food and some routine supplies and labwork, so it would truly be a partnership. We have now identified three hospitals that might be interested in partnership, and two of the country’s four neurosurgeons are extremely supportive of our plan.
Now we need to have it reviewed by several other physicians before we approach Dr. Kim at MCM. I feel good
about where we are on this even though the MOU is not signed; we know much more about the barriers to treatment, and what it will take to have the hospitals and doctors be willing to increase the number of cases so we can eliminate the waiting list for kids who need this procedure to survive. And I feel that I have been very helpful in pulling the proposal together and keeping us moving forward.
This morning Dick and I went to Zewditu hospital as guests of Dr. Mersha. He gave us a tour of this large public hospital, and invited us to sit in on a couple of surgeries. The second surgery was to have been for a shunt placement and repair of a myelomeningoceal, which is a birth defect where the spinal cord is outside the spinal column in a large pouch on the baby’s back. It usually leads to paraplegia, and is most often caused by a neural tube defect, commonly caused by a folic acid deficiency in the mom before and during pregnancy. The baby was prepped for surgery and the doctor went in, and then he cancelled surgery because the hydrocephalus, combined with the myelomeningoceal, was putting severe pressure on the brainstem and the baby was in critical condition and is going to die in a few days. The doctor felt that he shouldn’t do the procedure if it was not going to give this child a meaningful life. In the end, he decided to put in an external
drain to drain off the spinal fluid to take off some of the pressure on the brainstem and perhaps ease the symptoms the baby was having; if this worked and the baby improves, then perhaps the myelomeningoceal repair can proceed. As I stood by the operating table watching
this tiny infant struggle to breathe, and I realized that he was in his last few days of life, all I felt was that I wanted to pick this child up and give
I felt like that was the most important thing I could do with my life at this moment, just to hold him. After the procedure, we walked out to the hallway with Dr. Mersha as he told the parents why the baby did not have the planned procedure; even though he was speaking in Amharic and we couldn’t understand what he was saying to them, we could see they were stunned and not fully comprehending the hugeness of what he was telling them. I struggled to not cry in front of these parents facing the loss of their baby.
After the surgeries, Dr. Mersha took us to a little coffee place that looked like a tiny private home, painted hot pink. We sat outside on the porch for over an hour and talked about how decisions are made about hydrocephalus care in Ethiopia, and how we should select the best
patients for the procedure. He told us that not all babies on the list should get surgery, because brain damage has already occurred, and the babies may have a very poor quality of life.
He said that there was a British physician who had done a study on outcomes of children with hydrocephalus in third world countries, and his conclusion was that unless the child had not yet experienced brain damage, the shunt procedure should not be done. He said that when a child has birth defects, the parents focus intensely on the baby, even if they have other older children to care for. If the baby needs surgery, they can only get it in Addis Ababa, so they must travel very far away from home to get the surgery. The father and mother both come with the baby, so the father leaves his job for up to a month. While in Addis, the family usually stays with another relative, perhaps an uncle or brother, inconveniencing his family. And the older children remain home, being watched by yet another relative. The family spends all their resources to pay for the surgery, only to come home with a baby with severe physical limitations, maybe paralysis, and serious brain damage, so their life expectancy is probably pretty short, perhaps 5 years at best. During that 5 years, the family will have huge medical expenses, and the parents will both be fatigued and stretched by the child’s physical needs, and their other children are neglected. The surgeons feel like in this situation it would be best to let the baby die rather than try to intervene. While I understand the logic and reasoning behind this decision, as a
mother I would want everything possible to be done for the child. And, I found myself asking who had the right to make this decision. There are limited resources and not enough to treat all kids—but who has the right to be at the front of the line saying who gets treated and who doesn’t.
I don’t have an answer, and I am internally conflicted by this issue, and saddened that the situation exists that not all children can be treated in a timely manner like they are in the U.S.
The second big event was that I met today with Matron, after two weeks of trying to get an appointment. We spoke for an hour and
20 minutes, and it was a really positive discussion. I learned a great deal about the state of nursing education in Ethiopia, her frustration with constant staff turnover, her desire to improve patient assessment skills for nurses. She said that what would be most helpful to
her is to have help with additional nursing training. She was very enthusiastic when I told her about our hope to provide training in infection control; she was also positive about the new direction our hydrocephalus proposal is taking. And, she agreed to work with me to test the
new gauze that the women at the Mother Theresa Center are making. I felt that, if she was being sincere, we may have found some common ground on which to move the quality of nursing care forward. Hooray!
The third big event was when our big group toured the Mother Theresa AIDS Orphanage. It was about 45 minutes away from MCM, and in
a very poor part of town. The compound has a clinic, school, administration buildings, weaving factory, and dormitories. We toured the clinic and saw children with active TB in one room, and children receiving chemo in the other room. All of the children here have
AIDS, and with the increase in availability in AIDS drugs they are having remarkable success with keeping these children alive and healthy. The facility was bright, cheerful and clean, and the babies and toddlers were so cute!
The nuns were so nurturing and joyful in caring for these children, and I found myself overcome with emotion—not from sorrow for these kids, but because by deepest desire is to minister and care for children like this. It was an opening of my heart as I realized that my entire life’s dream was in front of me, and I was overcome with gratitude. It’s difficult to explain, but I was so fulfilled by the visit, and so impressed at the devotion that the nuns and the staff have to love and nurture these children.
After yet another couple of days of amazing experiences, I am in deep gratitude for the opportunity I have had to be here.