So Jorge called to set up a time that they could come to Berlin to deliver it. They wanted to go to the community and visit the little girl personally. So we found a time we could all go. It happened to be yesterday – Mother’s Day here in El Salvador.
Ursulo and Jorge from Rotary Club Siramá arrived about 10:15 in a smallish car. We all knew it probably could not make it on the roads in a canton so we loaded the wheelchair in the Pastoral House pick up truck and I drove us down to El Recreo.
I wasn’t entirely sure where Wendy lived in El Recreo – but I was told that we would be met on the main road by the cut off to their house. And sure enough, grandpa Alcides was there waiting for us!
He hopped in the back of the truck and pointed the way. I had never been on this road before – it was a bit rutted with some tight curves, a bit narrow in spots and well off the beaten path. We finally made it. I parked on the street but was soon told to move the truck into the yard because something needed to get by. I thought another truck, but it was an ox cart full of wood.
I went in to greet Grandma Marta and Wendy who were in the house. Wendy was finishing her meal of beans. The men unloaded the chair. We spoke for a while with Alcides and soon Marta carried Wendy out and set her in the chair. We all commented and expressed appreciation of the chair. And Jorge and Ursulo asked questions about Wendy’s condition.
It was all incomprehensible to me so I later asked Jorge to explain in English (he is bilingual). He said “the congenital defect of the girl in her back is named myelomeningocele. She went to surgery when she was one day old. Later she went back to the Operating Room and the neurosurgeon set a valve in her head to regulate the cerebrospinal fluid.”
Marta lifted up Wendy’s shirt so we could see where she had surgery. They must have grafted the area with the skin from her thigh. You can see in one of the photos a large patch.
I googled the condition to learn more. Skip the next 3 paragraphs if you are a little squeamish. It isn’t horribly graphic – mostly sad.
From the MedlinePlus website (A service of the U.S. National Library of Medicine NIH National Institutes of Health): Myelomeningocele is the most common type of spina bifida. It is a neural tube defect in which the bones of the spine do not completely form, resulting in an incomplete spinal canal. This causes the spinal cord and meninges (the tissues covering the spinal cord) to stick out of the child's back. Other congenital disorders or birth defects may also be present in a child with myelomeningocele. Hydrocephalus may affect as many as 90% of children with myelomeningocele. Other disorders of the spinal cord or musculoskeletal system may be seen, including syringomyelia and hip dislocation.
The cause of myelomeningocele is unknown. However, low levels of folic acid in a woman's body before and during early pregnancy is thought to play a part in this type of birth defect. The vitamin folic acid (or folate) is important for brain and spinal cord development.
Children who also have hydrocephalus may need a ventricular peritoneal shunt placed. This will help drain the extra fluid. This procedure is done in the operating room under general anesthesia. It takes about 1 1/2 hours. The child's hair behind the ear is shaved off. A surgical cut in the shape of a horseshoe (U-shape) is made behind the ear. Another small surgical cut is made in the child's belly. A small hole is drilled in the skull. A small thin tube called a catheter is passed into a ventricle of the brain. Another catheter is placed under the skin behind the ear and moved down the neck and chest, and usually into the abdominal (peritoneal) cavity. Sometimes, it goes to the chest area. The doctor may make a small cut in the neck to help position the catheter. A valve (fluid pump) is placed underneath the skin behind the ear. The valve is attached to both catheters. When extra pressure builds up around the brain, the valve opens, and excess fluid drains out of it into the belly or chest area. This helps decrease intracranial pressure.
Wendy does have Hydrocephalus. I could see the tube along the side of her neck and it’s origin on her scalp.
God bless that child!
As we were sitting and talking with Wendy and her grandfather, small talk mostly, Martha came out with bowls of beans for each of us. And then came out with heaping plates of tortillas. And then she came out with huge glasses of lemonade (which gave me no ill effects thank you very much!!)
This is another example of the generosity and hospitality of the folks who have so very little. I learned that this family does not own the home they live in … they are the caretakers of the property. Which means they at least don’t have to pay rent. But the only work the grandfather has is farming. And that does not provide much ‘income’ – especially when there is a bad harvest like the last two years.
I was very happy that Rotary Club helped this family! What a blessing!
And we will keep an eye on them. And I know their partner church in Iowa will also. They already have and I know they will continue!
Wendy in her new chair
Jorge, Alcides, Ursulo, Marta and Wendy
Jorge, Wendy and Grandma Marta
Ursulo, Alcides, Jorge, Wendy
An old wheel chair - they lead a rough life
Jorge and Wendy