Genetics

Friday, September 27

I am going to be brief tonight.  Today had some victories to celebrate, some challenges that frustrated, and some battles that were lost.  I think I will go in reverse order and end on happy notes.

We had to have discussions with the parents of the child with the congenital anomalies to explain the poor prognosis and let them be part of deciding what to do.  It is always hard to admit that you can’t do anything and a family is going to lose a child. They paid their bill and took the child home with little fanfare. That almost made it more sad, calm acceptance.  

We had one child carried into the ward by a medical aid with his head and arms flopping.  I ran assuming this child was near death and needed to be resuscitated. However, I met with alert eyes.  But they were the eyes of a child with Down Syndrome and his floppiness was his hypotonia. The patient has bronchiolitis and a loud heart murmur probably because of an underlying heart defect.  The mom has never been told. The child has never been admitted or seen by a doctor since birth. But she does know that his development is poor, that he does not hold himself up like normal, and that he doesn’t look like her other children.  The news of his limited life expectancy and poor functioning has not yet been explained. Genetics can be a blessing for some of us but can create significant challenges for others.

I talked on the phone with the education director late in the afternoon.  She had met with the medical students this afternoon and they were telling the stories of the unusual cases seen in pediatrics.  I told her that this week had been more of a genetics clinic than practical pediatrics.

I had a lot of times on the ward today where I was the only medical staff present and the Malawian staff had disappeared.  Typically not as frustrating, but we had arranged meeting with families that needed to be done in Chichewa and with cultural sensitivity.  I felt like everyone had decided that they could step out while I was present. Even my contact at the central hospital just now responded to a request I made 8 ½ hours ago.  Malawian time.

We also continue to have sporadic power which also means sporadic water pressure and warm water.  Luckily I don’t live high on the hill. Water is pumped here and in order for the pressure to be enough to get to the homes at the top of the hill, the pump has to run all day.  We are not a sweet smelling people!

We did have some good things.  Several patients got to go home today and are better or in good health.  One that had a large abscess and has been with us for several weeks got to leave today.  This little one named Ruth was very sick with malaria and now heading home. She has been smiling all day except for the moment I took this picture.  Two of our seizure patients were also ready to go home. I must remember that despite all of the moments that feel defeating, kids are helped by what we are doing.

Also, Amelia met with the consular and handed off passports for visas.  They should be able to pick them up on Tuesday and fly home to Georgia on Wednesday.  

Finally, I had a fun evening with group dinner here.  I got to talk to Chase via video which makes my heart happy.  And I have gotten to pull out my Cuddle duds fleece gear because it is down in the 40’s.  It does make for good sleep aside from the crazy animal noises. Last night the animal sounds were so loud I really did worry they were in my room.

I am glad it is Friday.  Happy weekend!