At Hogar de Amor I, II, and III, every day brings triumph and tragedy, large or small.
For better or for worse, we've joined the roller coaster ride that is the life of these kids.
What follows is the long-but-short-version health saga of one of our cherished babies. (For the very beginning: "Praise the Lord for ornery chickens". )
We've prayed so hard since V's bittersweet arrival, the same evening as a staff party, that she would have no lasting effects from her rough beginnings. Arriving at 2 days of age and weighing 5 ½ pounds, she was the youngest and has stayed the youngest (translation: much-loved princess of the house!). I knew that absolutely anything conquerable would be because V has the privilege of living in Hogar de Amor III, our family model home. She receives our absolute best as far as stimulation, love, attention, outings, activities, and staff-to-child ratio. (Side note: I would love to have multiple "small" homes like this but lack of dedicated families/couples for the job holds us into the “shift model” for the other homes.)
When V was three months, she was being evaluated by our psychologist and physical therapist. They came to the office and whispered to me that V had no response whatsoever to visual or auditory stimuli. For a few minutes I brushed their concerns away. I was remembering how with my baby B, many specialists became alarmed, and how I got the conclusion from two doctors when he was about 4 months old that he was blind and probably deaf. Within a couple of months, the blind diagnosis was proven completely wrong as he finally began to respond to and recognize us. From that devastating (wrong) news, and due to other “diagnoses” I became more hardened to believing the test results (which are often inconclusive with young babies).
Finally I agreed to see what they were seeing. Sure enough, she didn’t even blink at a flashlight, respond to loud claps—nothing. We even used other babies around her age as models to compare responses. The others were startled, blinked, sought out our faces, etc. But to our alarm, V remained distant and unaffected.
I made an appointment with our pediatric ophthalmologist. In upcoming weeks she also had appointments with our pediatric neurologist, as well as two different orthopedic specialists for her curved legs/tightness/odd neck position. Multiple tests, x-rays, and sonograms were ordered.
The eye exam went fine. Maybe the stimuli was not reaching her brain as it should, or she was just delayed.
The orthopedic doctor, the best in town, speculated that the blow to her head at birth was causing her left side rigidness, wandering left eye, cocked neck, and poor range of motion. He ordered daily hydro-therapy and said that with excellent care and stimulation, she would most likely be fine by 1 year.
Within a matter of weeks after turning 3 months, V had completely turned the corner and was much more responsive. We were so relieved! The Alseth family and staff at Hogar III began concentrating much more on her development, responses, and therapy.
Again I let my mind rest. There was much going on, always more babies arriving with new issues, and I stopped observing her as closely.
Then came Thanksgiving Day and enjoying the feast that my family and the Alseths had prepared to share with our families and the 7 Bolivian kids at HDA III. I couldn’t help noticing how curled up V’s hands/arms were, and her tightly clinched fists. Time had flown—she had just turned 5 months old. That position didn’t seem right at all. Maybe for a newborn, but not for her. She’s a very cute, petite baby, but still….it concerned me. I talked to our physical therapist about it and she said the exercises already being done would help, but I still didn’t ask her to check her out.
A couple weeks later while talking to the Alseth family, we decided her continual digestive issues warranted yet another consultation. Something was going off in my head: digestive issues, the intestines are muscles, she appears to have spastic muscles, cranial trauma at birth……all was fitting together, and I didn’t like the thought of the results. A Bolivian baby at our church who was with us a couple of months had recently been diagnosed with a mild case of cerebral palsy, and of course I live with B (CP) and have walked through each medical and developmental concern with him since he was an infant.
I decided to see a different pediatrician this time, one who is highly recommended and that all of our “foreigner” friends use. I went a few days before Christmas, when she would turn 6 months old, a developmental milestone. The doctor was extremely thorough in reading through her entire (very thick) file, asking me lots of questions (I called the Alseths for the answers I didn’t have), and examining her. After 50 minutes of intense concentration on V, the doctor put down his pen and leaned back in his chair. He suspects cerebral palsy, mild to moderate. Cause? Near suffocation at some point while thrown out in the plastic bag.
I left fuming for the 1000th time at whoever threw her out in that way. It’s hard to explain…I don’t judge the mother or whoever was behind it all. Circumstances can be extreme and excruciating and people are forced to make decisions they would never make otherwise, decisions they had never dreamed of making. But what remains is that that person(s) does not know what consequences this beautiful baby lives with, perhaps all her life, due to that choice, or series of decisions that ended poorly for this baby. Of course she survived and is now in a wonderful, loving home, and Lord willing will have a forever family one day, so her story will end much better than many. Our heart is broken again and again for these kids.
We weren't telling many people at first because we were waiting to do a CAT scan. The results came out normal, but with possibly overly-large ventricles that we hope become more proportionate as she grows. As I researched more what they should look like, it's obvious on her scan that the right side ventricles are bigger, which would explain her weaker left side??
A few days ago, the court called and needed updated psychological, social, and medical reports on V as they process her paperwork (“no existing family”). I asked the same pediatrician to write up her medical report, and he mainly spoke of her having the signs of cerebral palsy, but a mild case at this point. It has a tone of urgency to it, stating that she needs many resources to have the opportunity for a normal life, so hopefully her case will not just be tossed into some dark corner of the court and forgotten.
I couldn’t help but be saddened at how that narrows down her possibilities of a family. Without even a picture or video to go on (Bolivian law), potential adoptive families do not even have the benefit of falling in love with that CUTENESS (curly hair, huge brown eyes, chubby cheeks!) before being hit with the diagnosis.
We trust that our Heavenly Father has the perfect family chosen for V, and indeed all of our special needs babies! He has provided in the past and we know He will in the future. We cannot wait to see how He works in V’s life, to improve her quality of life through the hands of those who love her, and to set her in a family (Psalm 68:6).
Thank you for lifting our 36 babies and young children up to our Father!
Adios, Shana and Hillary - Thanks to Carla Booher for the blog! :) Wednesday night we had a "going away" party for two of our volunteers. Shana is from Texas and has been touring...
3 years ago