Monday, January 5, 2015

If You Don't Believe in Miracles...

Expect failure, be surprised by success...

Five and a half years ago when my husband, Chris, and I were in Haiti meeting for the first time the two children we were adopting, Sophia and Henry, I remember going to the US embassy in Haiti to file some of the mountains of paperwork involved in such endeavors.  We had an American woman who was directing our trip and had been in Haiti on several occasions helping us navigate the embassy visit.  I guess at some point she must have been trying to address some of our fears about the actual chance that the right paperwork would reach the right person's desk necessary to make the long adoption process slog along.  She told us, "In Haiti you'll have a lot less frustration if you go into everything expecting failure, because then you are surprised by success."  Well due to an earthquake that killed 250,000 people a mere 6 months after that but managed to spare our kids, we were able to get Sophia and Henry out of Haiti and home to Cincinnati just two weeks later.  I remember during those dark and scary two weeks coming back to that saying again and again.  Would we be able to get them home?  Everyday there was some element of expecting failure, but thankfully plenty of surprise at the successes.

Well, every now and then in the practice of medicine we expect failure and are surprised by success.  For those of you who are familiar with the Guatemala trip you already know a very special little girl named Luisa.  I first met Luisa 3 years ago this week, just days after her first birthday.  Luisa is the youngest of 7 children and her mother came to clinic that day with a sad heart.  Having already raised children she knew there was something fundamentally different about Luisa.  She wanted to know why Luisa could not roll, sit, crawl, stand, walk, babble or talk like her other children did at age one.  During the conversation I was having with Luisa's mother Luisa herself was hidden from me, wrapped in her hand-woven peraje and tied like a sling to her mother.  Without even laying eyes on her I knew Luisa had a major diagnosis.  As we pulled the baby out of the sling and put her on the exam table in front of me I saw a baby with profound quadriplegic, hypertonic cerebral palsy.  She already had joint contractures, frozen up wrists stuck in constant flexion, scissored legs.  I finished my exam and sat down to have a hard conversation with Luisa's mom.  Doctors never want to give bad news.  I told her I didn't think that Luisa would ever walk or talk.  The way most cerebral palsy patients die is from aspiration events that lead to pneumonia.  Luisa had no gag reflex and that day she had pneumonia.  I gave her mom instructions of how to keep moving her joints and told her to try to find physical therapy and occupational therapy to help her.

I honestly thought that would probably be the last time I would see her.  Without proper nutritional support, treatment of future pneumonias, PT, OT, how could she survive in this little impoverished mountainside?

A year later Luisa's mom proudly carried Luisa into clinic beaming with joy that her little treasure was still alive.  She had found a pediatric therapist to do PT and OT with her once a week in a town about a 20 minute car ride away.  Luisa's joints were no longer stuck, but now she was very hypotonic.  She still at age two would only nurse for nutrition, blocking any type of solid food, but she had not had any aspiration events.  Then last March I saw her for the third time when she was just over 3.  Her family was very faithful to her therapy regimen, taking her to town every week.  She had started to scoot around the house in a baby walker.  At age 3 then she had only one word in her vocabulary, "mama."

She has become the star pediatric patient on each trip.  She has so much to teach these future doctors, nurses, occupational therapists, and every year she teaches me.  This year is no different.  We arrived to clinic this afternoon and were still getting all of the supplies that we brought down set up - a thousand pairs of glasses, suitcases full of medications, toothbrushes, hygiene supplies, etc when I looked to the entrance of the clinic to find three people WALKING into clinic holding hands.

Luisa was being flanked on each side by her oldest sister and her mother, but she was lifting each leg and putting it one in front of the other.  She was walking into clinic.  It took me several seconds to register what I was actually seeing.  Luisa was walking.   Her mother was gleeful to see my surprise and delight.  Luisa turned 4 last week, last month she started walking with both hands held.  For the last 3 years I had been expecting failure, today I was surprised by success.

If you don't believe in miracles, you need to meet Luisa.

Lauri Pramuk, MD

1 comment:

Ms. Bellman said...

Thank you so much for telling me about the blog and shaing this tremendous story. Xo- margo