The peace pact I've made with Death is not honored so easily when I am faced with situations in which adequate medical care could make the difference in the outcome of a child 's illness or infirmity. For
this reason I've spent more than a few hours in clinics and doctors'
offices, in addition to teach at Nueva Vida.
Monday Dick and I were in Hermano Pedro with a family from
Huehuetenango whose ten month old has a cleft lip. His older sister
had also had one, and the parents had it operated on in Huehue and are still working to pay off $500 they owed the surgeon. There is no
money for surgery for Brayan, so Dick brought them down with him when he returned from Huehue last Sunday.
Why do we need to provide transportation and stay with a family for
such a simple thing as a doctor's visit? Well, while Dad spoken some
Spanish, he had never been out of the area around his remote village
outside of Huehuetenango, in the western highlands of Guatemala. Mom, on the other hand, spoke almost exclusively Mam, the Mayan language of that region, and looked more like a scared little girl than the mother of two children. She was totally intimidated by the city and overwhelmed when we took them to the hospital, which was jammed with people waiting to see the doctors. (I can't believe that Hermano Pedro manages to get them all in on a single day, but somehow, by 1:00, the halls are clear.)
When we took them to lunch at Camperos, I had to show her how to use the "modern" bathroom. I can't imagine feeling that lost and being alone.
Anyway, the doctor referred him to the plastic surgery team coming in
the 21st of this month, but also to the nutrition program and the
hospital. Brayan weighed only 16 pounds, and while he looked healthy enough to us, he was a the low end of the growth scale. Since 16 lbs is the minimum weight for the cleft palate surgery, the doctor wanted to make sure he didn't loose any weight in the few weeks until the team arrives.
It seems I always learn something new in these visits that I can use
with other families. Today it was the fact that if you cook
Encaparina, a liquid food similar to Ensure or Pediasure but much less
expensive, more than 10 minutes you begin to destroy the nutrients. I can't tell you how many houses we've been in where Mom is simmering it on the wood stove all day long, and taking out only what is needed. This makes sense, since there is usually not refrigeration available, and the heat keeps it more sanitary. Now I know to teach the moms to make only as much as will be consumed in a single meal, and, thanks to the nutritionist, know the correct proportions to mix a smaller amount.
That afternoon, Dick took Brayan's family to the bus in Chimaltenango
which would take them back to Huehuetenango. We were lucky to find a chicken bus that would take them all the way without transfer, thanks to Pastor Juanito's directions.
I stayed at home in Antigua and welcomed the Gabriel's family Monday afternoon. They would be staying with me for a few days, since they were seeing not only the urologist at Hermano Pedro, but our friend, Dr. Pozuelos, a neurosurgeon in Guatemala City, later in the week. This family lives near the coast, but is very "savy" when it comes to medical care.
Gabriel had been born eleven years ago with spina bifida, and still has a large, unprotected meningeocele (ball of nerves and tissues) protruding from the opening in his spine. At the time he was born the doctors advised against surgery, since he has
sensation and movement in his legs. Removing the growth on his back could, and often does, take away any movement or sensation below the repaired area. Wanting to do the best for him, the parents did not have surgery.
What we have found out this week both angers and saddens me, as well as shows God's hand in all we do. Gabriel had been seeing the
Urologist at Hermano Pedro, since he has lost bowel and bladder
control recently. The urologist ordered an ultrasound of the bladder
which appeared normal, and another appointment was set up for August 19th.
Since they were already in Antigua, we were able to arrange for them to see Dr. Pozuelos, as Dick was concerned that Gabriel's head, obviously hydrocephalic, might be continuing to grow. We left Dr. Pozuelos' office a bit overwhelmed. I can only imagine how the parents were feeling. The good news was that the pressure in Gabriel's head as not increasing, due to the ball of tissue and nerves on his back acting as a safety valve. That's where the good news ended, though.
Dr. Pozuelos explained to us that Gabriel was at a very high risk for
meningitis, which often is fatal in this country. If Gabriel were to
injure the ball on his back, even a simple scrape, he could open a
pathway for bacteria to enter directly into his spinal column, and
attack the tissues surrounding his brain. This makes so much sense,
but was something neither Dick nor I had considered previously. Dr.
Pozuelos also said the loss of bladder and bowel control was due to
the entangling of the nerves in the ball of tissue, and was
irreversible.
His recommendation was for two surgeries. First, to place a shunt or
valve to drain the excess fluid surrounding Gabriel's brain. The
second, to repair the opening in the spine. If the spine is repaired,
without first putting in the shunt, the pressure surrounding the brain
would become unbearable, and do significant brain damage.
The doctor was very frank with the parents. The surgery is very
complicated given Gabriel's age. (It is much simpler if done
immediately after birth, before the nerves begin to intertwine so
significantly.) He can and probably will lose the use of his legs (he
can crawl now). There are significant risks to the surgery, but Dr.
Pozuelos believes that the risk from meningitis is far greater.
Since we do not have funds available for this to be done in a private
hospital, Dr. Pozuelos gave us the name of a friend of his, who is the
head of the Spina Bifida project at San Juan de Dios Hospital, also
here in Guatemala City. This is a government hospital, so the
treatment should cost little, if anything. Dr. Pozuelos assured us
that this doctor is more qualified than he to perform a successful
surgery.
Fernando riding home with Gabriel
I will be calling San Juan de Dios on Monday, trying to contact the
doctor for more information, and setting up an appointment. Gabriel's parents asked for a two week period in which they can fast, and pray and seek God's will in this matter, and we are happy to honor this.
To my "Second World" mind, it's a no brainer--have the surgery.
However, through these parents and others like them, parents of great faith who love their children dearly, I am learning the wisdom of
consulting God, as well as competent doctors, before making medical
treatment decisions. I am learning that just because something CAN be done medically does not mean it SHOULD be done. I am learning I am not wiser than these simple parents, which I may exceed in education, but they far surpass me in their trust of an ability to hear from God.
We will wait and pray and seek God together. Dick and I have promised to support the parents in whatever decision they reach. I have to admit, though, my heart hurts at the thought of Gabriel, who is so energetic, having to cope with the loss of the use of his legs. My
heart breaks, though, at the thought of him losing his life.
Please join us in praying for Gabriel and his family
Some more pictures from taking Gabriel home:
Gabriel’s parents with their grandson. What a neat family. Dad is a pastor; when he prays you can just feel the Holy Spirit fall on the room. We are so lucky to be getting to know them.
Gabriel with his kitty. He shocked me (and I’m sure the kitty) when he snatched it up by its tail as it wandered past his wheelchair.
Mom raises chickens. She has promised me one when it is grown. I imagine it will be alive, so. . .
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