Once again I am amazed to see children learn to stand and walk after debilitating illnesses! It seems our hospital is gaining a reputation for being a place where children walk again, recovering from chronic illnesses such as TB, malnutrition, meningitis, etc. I give thanks back to God for His faithfulness to us. I give thanks to Him for all I have learned in the last five years caring for a vulnerable population. This week I give thanks for Debra’s (name change) recovery from osteomyelitis caused by tuberculosis. She was in so much pain only two months ago, such that I could barely examine her painful legs. She required anesthesia for pain control. Her hip is permanently dislocated, but she is able to stand. She will likely form a false hip joint and walk soon.
I want to give a few stories to illustrate how medicine looks different here in Congo compared to the USA. I frequently have these kinds of conversations and today it hit me that others might be interested as well.
Sickle Cell, the “banana cell” disease
I sat down to counsel the family of a short 4-year old girl with the new diagnosis of sickle cell anemia. The father came from home to give blood and talk with us about her medical problem. I drew an orange and said, “This illustrates what a normal red blood cell looks like.” Then I drew a banana and said, “This is what Furaha’s red blood cells look like.” I proceeded to draw one orange and nine bananas to represent 90% sickled cells. I said when the majority of her cells change to the shape of a banana she needs a transfusion
The family asked, “Will changing her diet improve her health?” I said eating lots of green vegetables and beans will help her to make new red blood cells. But I said food will not cure her. She was born with “banana shaped cells” just as she was born with brown eyes and food won’t change that.
Then the family asked, “How do we prevent having another child with this disease?” I told them that you can’t prevent it if both of you carry the possibility to give it to your children. A nurse asked, “Should they use contraception?” To this I said, that is up to them as there is a chance that they will have a child without sickle cell anemia. There is also a 75% chance that they won’t have a child with the disease.
Then they asked, “Did her brother die of the same problem.” I replied, “Probably, yes.”
Then we talked about the three things the family could do to prevent future hospitalizations. First, there is eating three times a day, a diet rich in iron and taking daily iron supplements. Second there is preventing infection (thus hospitalizations) with monthly antibiotic injections of benzylpenicillin and vaccines. Lastly I advised her to prevent dehydration with lots of water everyday. I advised them to come to the hospital at the first sign of fever and/or anemia, with a potential blood donor.
The family nodded understanding and motivation to care for their little girl. I did not draw any genetic diagrams or give any complication teaching, but nonetheless the message seemed to translate well.
Recurrent fetal deaths
Next I saw a 20year old woman with her husband and father (!). She had had three full-term babies that died shortly after delivery, after seemingly uncomplicated pregnancies. I asked lots of questions from her prenatal care, size of the deceased babies, menstrual cycle, etc. In the end I was left with the unsatisfying advice to do blood testing for common diseases like hepatitis, syphilis, HIV, blood type to see if we could identify a chronic medical problem. If there is not a chronic problem we were left with the likelihood of a genetic problem linking these deaths. I wondered about the presence of her father, but she really wanted his support and presence. I am reminded on a daily basis to ask questions, not judge people/situations, and to ask how I can best support them. I see some really challenging social situations (sometimes infuriating), but I have learned to step back and ask how can I communicate the love of God to this person.
An All-Star Grandmother
The last story of the day happened on rounds. I love this particular grandmother, all of 5 feet tall, ripped arms, bare feet, always with a big smile on her face and a word of “thanks.” I knew she had a story. Well today she told the whole room her life story. She left a militia occupied area in the forest where she lost everything, moving with her grandchildren to live in the nearby community called Irumu. It is a sad, yet hopeful story. You can tell by looking at her that she is hard worker. I asked what she was currently planting and she named every possible vegetable imaginable!!! I told her that I needed to visit her home and fields to learn from her. She replied that she needed to do this to feed and support her family (so encouraging!). I told her that there was a special reward in heaven for grandmothers like her. Then she told me how much the older girl struggled with losing her leg in a below the knee amputation. During a recent hospitalization, her father came for a visit. It seems that he has left the family and the girl asked him why he left. He didn’t have an answer. A tear welled up in her eyes as the story was being told. My heart was moved. I was reminded yet again that God is our Father, who looks out for us when our earthly fathers are not. I told her how much God the Father loved and treasured her and saw her struggles.
Children’s hospital ministry…it is about being the family of God to one another and loving unconditionally. It is about encouraging the beautiful reflection of God in every person we touch. It is about loving people into the Kingdom of God.
We had a wonderful visit from an older Swiss missionary Yvonne and her friend Mary this past week.
Over 30 years of faithful service to Congo! She came to celebrate her 80th birthday. It was truly an honor and inspiration to be together.