Life And Death

Four of my boys and I spent most of week before last up in Huehuetenengo.  The area north of Huehue seems to be one that has lots of poverty and very little help from government or private organizations.  Thanks to some generous people we were once again able to bring in some much needed food and Vitamins and a few wheelchairs.  

Knowing how much it breaks my hart when I do not get to sit for hours at my computer writing journals and days trying to correct at least some of the spelling I hope that you feel a little sympathy for me when I say that I am going to put this Huehue trip into the following slide show instead of writing about it.  The reason that I am doing this is to allow space for some Journals that Pat just sent me about what went on this past week.  Anyway I hope you enjoy the slide show, and I know that you will enjoy what Pat wrote.

Pat wrote the following.

Today I have set before you life and death. (part 1)

When I first came to Guatemala, I never imagined I would be so involved with life and death. I came to teach, work with kids, help them communicate. Nor did I think for a moment that I would need to make peace with, if not befriend Death.

But this past few weeks have reminded me that this is not the case in the majority of the world. (We used to call these Third World countries, but the term Majority World more accurately reflects the reality that most of the world lives in deep poverty, without access to even basic quality medical care.)

My recent journey with death began a couple weeks ago, when I received word that Griselda, a fourteen year old girl from Santa Maria with CP and autism, was very ill. I never did find out exactly what was wrong with her, but from what I could gather she had some type of renal failure. Her mother told us that there was some type of operation the doctors in Guatemala City had recommended, but could not describe it very well. (Looking back, I am wondering if it was to put in a dialysis port?)

This family, who dearly loved Griselda, decided to bring her home and trust God to heal her if it was His will. Her feet became so swollen that she could no longer walk. One day we went to her house to try to give her a wheelchair, but were unable to see her. (The family was praying over her with folks from their church, and could not hear us knocking.). The next morning I received a call from my friend Jennifer, our speech therapist, that Griselda had gone home to Jesus early that morning.

My heart sank and yet rejoiced that she was now whole. Not only was she healed of whatever disorder had killed her, but also of her cerebral palsy and autism. As I write this I can picture her running and talking and laughing with Jesus. (I hope her laugh is the same in heaven. When she would laugh here on earth, which wasn't very often, it sounded like music.)

Do I grieve for her family who will have to discover a "new normal" living without her? Of course. But I also realize that she is finally free to be who God intended her to be before creation. Before sin entered His perfect world, and contaminated it with sickness and death.

So what does one say to a family that trusted God to heal their daughter and sister? With a confidence I've learn in Guatemala I can assure them He did. She is now whole and healthy, and waiting for them with Jesus!

   

Pat

Today I have set before you life and death. (part 2)

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 of life or death 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 my teaching 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 been born with cleft pallet, and the parents had her operated on in Huehue and are still working to pay off the $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 spoke 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 the baby to the plastic surgery team coming in the 21st of this month, and 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 nutrientI 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 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 "savvy" 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.

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.
 

Today I have set before you life and death. (part 3)

After a rather rough week of teaching and doctors visits, Dick, Fernando and I decided to head down to the coast for a couple of days, to take some food and medical supplies to Dr. Jose, and "pay up" on our promise of a reward fro good grades to the children in two families we know and love.
 

After droping off Gabril and his family at their home, we stopped and saw Marvin, an eight year old with cerebral palsy, and his family.  Through Bethel ministries, Dick has gotten sponsorship for the older brothers to go to school and we wanted to reward them for their hard work.  We stopped to invite them to swim with us tomorrow at our hotel.

We were dismayed and concerned to see how skinny the whole family was. Marvin, Momma and Grandma, especially, were nothing more than skin an bones.  It had only been a few weeks since we had last seen them and thought they were all looking better.  Mom explained that she had taken Marvin into the clinic in La Gomera where our friend Doctor Jose is practicing, and had been given some medication for fever and parasites.  Marvin did not seem to be getting better though.  We wondered about recommending the malnutrition project at Hermano Pedro to the family. 

We made a mental note to talk to Dr. Jose about the family, as we headed to the clinic in Sicapate to bring him some medical supplies and food for some of the families that he works with.  When we talked with Dr. Jose about the family, Dick wondered aloud if maybe they had tuberculosis, which is common in this country.  Dr. Jose immediately agreed to accompany us the next day to visit the family when we went to pick up the older boys for swimming.

Saturday morning we picked up Dr. Jose, and headed to the see the family in their village.  How many doctors do you know in the US who would take a few hours from their day off to travel to a remote area just to check on a child they had seen only a week earlier, just because we thought it was important?  Dr. Jose did not hesitate to offer, and this is one of the reasons we love him so.

Arriving we discovered that Mom still had most of the parasite medication that she had received at the clinic earlier in the week. When questioned more thoroughly, we discovered that she had been giving Marvin only half the prescribed amount.  No this was not in a misguided attempt to save money.  It was due to her lack of experience and education.  In the past she had been given a 10mm syringe to administer medication, so 6mm was about half that syringe.  This time, however, she had a 5mm syringe, and was filling this one up half way, as she had in the past.  Only this time, Marvin was receiving only about 2.5 of the 6mm prescribed for him 2 times a day.  We cleared up
this misunderstanding, I hope.

Dr. Jose also reminded her that he had recommended that she cut  Marvin's nails short.  Parasites hide in the area under the nails and are ingested when children eat with their hands, which is a common practice here.  (This makes so much sense, but again was something which had never occurred to me!  I'm adding nail clippers to the supplies we carry when we travel.  So much easier to use on a child than scissors, which the family may or may not have.) 

  12 year old Tony holding 9 year old Marven.

All of the kids are very small for their ages.

I then explained the malnutrition project at Hermano Pedro to Mom, and asked if she thought they would be interested in this treatment to get Marvin stronger and healthier. She promised to talk with her husband about this when he returned home.  After Dick and Dr. Jose talked some
more with the family, it was decided that we would get parasite medication for the entire family, and give them a water filter to make sure their water was sanitary and parasite free.

Fernando did an excellent job of explaining the importance of drinking only purified water, and Carlos, the oldest son was listening intently.  We asked him if he would be responsible for helping with the water filtration process and his eyes lit up and he readily agreed.  Dick would bring back a filter and demonstrate its use when we returned the children later in the afternoon.


Our next stop was at a nearby family.  We had been hoping to take these children swimming with us, too, but sadly they were unable to go with us.  The oldest daughter had been having pain in her side and had been in and out of the National Hospital, the family insisting it was an appendix which needed to be removed, and asking for us to pay for treatment in a private hospital.

This did not seem to make sense to us, since it doesn't seem likely that a "hot" appendix would go into remission as many times as her's has.  Dad was glad we brought Dr. Jose along, and asked him to look at the records of her hospitalizations.  Just as I'd thought, it was not her appendix, but an ovarian cyst.  Dr. Jose explained the situation to them, recommending they come to see him at the La Gomera clinic no later than Tuesday morning.  He explained to dad that the cyst was at risk of rupturing and would need further treatment, which could be received free of charge in a National Hospital.

The rub, here, is that the mother of the family REALLY does not like Dr. Jose.  We are anxious to see if they will follow up with him.  In case they don't, I also explained that there are gynecologists available at Hermano Pedro, as well as surgical teams which can perform this surgery, again at minimal cost.  The family only needs to come to Antigua.

This is a difficult case, since in the past much has been done for this family by a variety of mission groups.  They have come to somewhat expect special treatment, and I'm not sure they will even come to Antigua to get treatment for their daughter.  They probably would if we came back to get them, and drive them there, but there is no good reason they cannot come up on the bus.  This is one of those times when we have to remind ourselves that we only do for others what they are unable to do for themselves.  It is hard, though, to walk away when a child is involved who may suffer due to the ignorance or stubbornness of his/her parents.  Ultimately, though, these children are the responsibility of the parents, and we are not here to take their places.
   
When Marvin's brothers were returned home after their swim Dick and Fernando were able to talk with Dad. They showed him and Carlos how to use the water filter, and they listened intently, promising to use it faithfully.  Dad even promised to get water bottles the boys could fill to take water to school with them, so they would only be drinking purified water.  This family seems to understand the importance of clean water, since they had been boiling their drinking water.  Dick explained the importance of making sure that the containers water was kept in were absolutely clean also.

Fernando also explained the use of the parasite medication which we had gotten for the entire family.  We are hoping that with the filtered water, medication, and some nutritional support this family will soon be doing better.  (If you would like to sponsor this family for a food supplement each month--about $35--please email me.  Dad works hard, but work here is usually only available 6 month of the year during sugar cane harvest.  Dad has been out looking for a job daily, but so far has found nothing.  Dr. Jose verified that there is little employment available here outside of the 5 to 6 month cane harvest.)

Jose 13, Tony 12, Carlos 15, with Fernando 15

You can see the 3 brothers are smaller than they should be.

Dad talked with Dick about the possibility of taking Marvin into Hermano Pedro, but Dad explained he couldn't face having him so far away.  He is hoping that with the correct dosage of parasite medication, pure water, and properly prepared Encaparina Marvin will do better.  He is open to revisit the possibility of in-patient treatment in the future if Marvin does not improve.  We explained that we support his decision as a parent, but also asked permission to check back in a few weeks to see how things were going.

So, here we have two more families facing life and death decisions for their children. They are so different.  One family seems to be deciding out of stubbornness and a sense of entitlement to "wait us out" until we provide private treatment for their daughter.   While they wait, their daughter's cyst could rupture, risking possible hemorrhage.

The second family seems to be deciding out of real love for their child, and the desire to do the best for him--even if we, as outsiders, might think something else is best for him.

While both families claim to be Christ-followers, only the second talked of seeking God's guidance and placing their child's life in God's hand.  That's probably why it is so much easier to support this
family's decision.

Please pray for both of these children, as well as the others we work with who have significant medical needs.  Pray for wisdom and humility for their families.  And pray for us to trust God's ability to work in and through these situations.  Pray we have the humility to trust His heart more than we trust our own "wisdom."  And pray that we never hold back what help we have available, but that we use supernatural discernment in knowing if, and when, and how much to help.
 

The music in the restaurant is playing "All I need is a miracle, All I need is You."  I know it wasn't written to God, but it's a good reminder to me that all I need is God.  The rest is His to control and guide, we are just along for the ride.

Pat

Thanks Pat,

Goodnight,

<>< Yours in Christ: Dick ><>