Andres Herrera
January 15, 1995 – June 10, 1996
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It has taken me 5 years after the death of my son to be able to write his story. It’s difficult to put on paper the memories and the myriad of emotions that surface when I think of my little boy and the short existence he had on this earth.
It was an early Sunday morning on January 15, 1995, when I felt the contractions and the excitement that came from knowing that my baby was about to be born into this world. I woke up my husband and together we drove to the hospital where a few hours later Andrés René Herrera was born. There were no complications during delivery and my husband, my daughter and I were finally holding in our arms the newest addition to the Herrera family.
The following weeks after Andrés’ birth were typical of any family with a newborn baby; changing diapers, bottle feedings, visits from friends and family, presents and congratulating cards, getting to know our new baby and enjoying the blessing of having another healthy child.
Andrés started sleeping through the night two months after he was born. An event I was grateful for because my maternity leave was over and I had to go back to work. Then came smiling and cooing. Oh my baby had such a beautiful smile!
My son continued to grow normally and reached the milestones that every healthy baby is supposed to reach and before I knew it, my Andrés was 10 months old, he was all over the house and getting ready to walk! The Holidays came along. My little boy enjoyed eating, so turkey, mashed potatoes and dressing were the highlights of Thanksgiving followed by bright lights and Christmas trees.
On Christmas day my daughter Amanda, who was five years old at that time, was the first one to get up to open presents followed by Andrés who wasn’t sure what to do but tried to follow the example of his older sibling. My husband and I noticed Andrés wasn’t very interested in opening presents and he looked a little sad which was very unusual because he was a very active and happy baby but we didn’t think much of it. He had been running some fevers a few weeks before and was getting over an ear infection so we just thought he wasn’t feeling completely well yet.
The days after Christmas we notice he was having trouble sleeping and would “cling” to us. No one could hold him but us, which was again very unusual since he loved to get other people’s attention and would go to anyone who would be willing to hold him.
New Year’s eve came along, Andrés was now having trouble pulling up and standing. We also noticed some stiffness on his legs and became very concerned so on January 2, 1996, I took him to his pediatrician to try figure out what was wrong. He cried throughout the examination, every time the pediatrician would sit him down he would cry even more so he ordered several tests which were done that very same day and so it began a series of testing that would last a whole week. X-rays of his lower back and legs, then a whole body bone-scan, blood work and so on. Every single test came back with nothing.
In the meantime Andrés continued to get worse. He seemed to have lost his energy and although he tried so hard to pull up or crawl he couldn’t do it, also his hands began to lose their grip so he couldn’t hold his toys anymore. He continued having trouble sleeping so we spent many nights holding him in our arms pacing around the house trying to console him and help him go to sleep.
After a whole week of tests and sleepless nights we urged the pediatrician to take a more aggressive approach and he referred us to a neurologist who was a close friend of his. We were able to see him a couple of days later, after the examination he ordered an MRI. I remember going into the room where the MRI was being done, as I watched my sedated baby inside this loud machine I started crying and praying that we would be able to find out what was wrong with my Andrés.
A few days later my prayer was answered, but not the way I was hoping. The neurologist called on a Friday to say that the MRI did reveal something wrong with my son and asked my husband and I to see him in his office the following Monday so he could explain in more detail. On Monday, January 15, 1996, my Andrés’ first birthday, we received the most devastating news a parent will ever hear. The MRI had revealed our little boy had a very rare and fatal disease called Krabbe. Although the diagnosis had to be confirmed with a blood test, the neurologist was almost 100% sure of the certainty of the disease. We were also told that the disease had presented itself so aggressive so our child would die within 6 months.
We walked out of the doctor’s office numb and in shock, we hardly spoke on our way home and for the rest of the day I felt I was living a nightmare and just needed someone to wake me up. I couldn’t cry, I stared at the walls of my bedroom numb and at the edge of insanity. I just kept repeating in my mind; “This can’t be true”, “Oh God, it’s a mistake…they made a mistake”, “Not my little boy… God, not my little boy.”
Unfortunately two weeks later the diagnosis was confirmed with a blood test and with the reality of Andrés’ deterioration. With no hope for a cure, we focused all our efforts on loving our child and making the best of the little time we had left with him. Andrés died peacefully in our home on June 10, 1996, surrounded by the love of his family.
We are thankful that although Andrés lost movement and control of his body, he never lost his hearing, sight, ability to swallow and, most of all, his beautiful smile. Andrés was truly a fighter and through it all he never stopped smiling. He is forever in our hearts and I will always be honored to call him my son.
Beatriz M. Herrera
September 2001