At first it was like a fairy tale dream. Little did we know it would soon turn into a bad dream and a never-ending nightmare from which I just couldn't wake up.
My story begins on September 23, 1985, the day I gave birth to my first and only son, Shayne Warren Davis. His weight at birth was 6 lbs. 6 oz. and he was 19 inches long. He had big brown eyes with some gorgeous, blonde hair. He seemed to be a perfectly healthy baby boy with all ten of his fingers and toes.
Shayne was born at Valley Medical Center here in Fresno, California. My delivery was normal with no complications, so everything seemed to be fine. We were released from the hospital the next day and moved in with my parents until we could find our own place. I tried to breast feed him from the moment he was born, but he refused to nurse. So after two days of trying, I gave up and went to bottle feeding. I tried Similac formula, but he would only drink an ounce at a time every three hours. I was really starting to become concerned when his appetite kept decreasing at each feeding.
On the fifth day, he was down to drinking almost nothing. By the end of the day, he had only consumed three ounces. His last feeding was a half ounce at 11:35 p.m. that night. On the morning of September 29th, I awoke at 7:35 a.m. Shayne had slept through the night without waking for any feedings. I went to his crib, and he was lying in a very odd position with his back arched. He was stiff and seemed to be in a very deep sleep. I tried to feed him, but he wouldn't open his mouth. I couldn't open his mouth with my fingers; it was like his mouth was glued shut. I got really scared at that point.
I took Shayne to the emergency room at V.M.C where he was born. A doctor came in to examine him right away. He shook his head and said he would be right back. Two more doctors examined him, and they too were very confused about what was causing these symptoms. Then Shayne started having seizures, one after the other. They gave him massive doses of phenobarbital and finally brought the seizures under control. They admitted him to this hospital where he was born. The doctors thought he could be diabetic, but a blood test ruled that out.
He was taken to the Newborn Intensive Care Unit and isolated from the other babies. Shayne was now in a coma and was put on a respirator to help him breathe. His condition was getting worse; his kidneys became weak, and they feared he would have kidney failure. The doctors knew that the longer he stayed on the respirator, the weaker his lungs and other vital organs would become.
After two weeks, the doctors decided to try to get him off the respirator. They tried twice, but he had to be revived each time. They told us it was very hard on his little body each time he was revived, and asked if I wanted them to try again if he failed to breathe. Did I want to put him through that kind of trauma again? I was so upset and unsure of what to say, all I could do was cry.
I was given a little time to decide. Once I calmed down, I began praying, asking God to please give me the wisdom and strength to make this major decision. And He did. I knew I had to think about what was best for Shayne and not for my own selfish reasons. It was the hardest decision I have ever had to make, but it was also the best. I told the doctors that if my son didn't breathe on his own, they should let the Lord take him and let him be at peace, feeling no more pain. I was only seventeen and had to make a decision that would change my life.
The doctors went to his room and began the process of taking Shayne off the respirator while I stood outside his room and prayed. I begged God to please allow my baby boy to live on here with me for as long as possible. I kept saying, "Breathe baby Shayne, please breathe." He stalled for a few seconds, and then sucked in a few breaths of air and began breathing on his own. The doctors were so surprised. They came running out of his room saying, "He did it, he really did it!"
I was totally shocked, but happier than words can say. My son did it; he had such a strong will to live. God really did hear my prayers, and from then on I had faith in God. Before then, I wasn't sure there really was a God.
Now it was time to really focus on finding the cause of his critical condition. After several more doctors examined Shayne and were unable to make a diagnosis, a specialist in genetic metabolic diseases was called in. That's when I met a very special doctor and person, Dr. Susan Winters. In my eyes and Shayne's, she was heaven-sent.
Shayne was about three weeks old by then. Dr. Winters examined him and the first thing that she noticed was the odd smell from his urine. It was a sweet smell, like maple syrup. Dr. Winters had never actually treated, or even seen, a patient with MSUD. She had only read about it, and Shayne had all the symptoms. She drew blood and sent it to the nearest lab which was in San Diego.
It seemed like it took forever to get the results back. When they finally did, the results were positive. My son had maple syrup urine disease. We wanted to know all about this rare disease with such an odd name. We had no idea what we were going to experience.
Dr. Winters consulted with another doctor from somewhere back East for advice. The first thing she had to do was to figure out the right mixture for Shayne's MSUD formula. It took several tries before she got it right. I don't remember exactly what it consisted of, but a little bit of regular milk was added, and, for a brief time, thiamine was added. They had to tube feed him for a short time until he would suck from a bottle.
Shayne was finally able to come home at almost five months of age. It was the beginning of February, and he did pretty good. He got sick a few times after that, but it wasn't too bad. He was also hospitalized a few times for different reasons. Since then, Shayne had surgery on his legs to correct the damage done while he was in the coma. The surgery was not very successful. Even though the doctors aren't very hopeful, we still keep on hoping that some day Shayne will walk.
Because California does not test all newborns for MSUD, my son suffered severe brain damage. Shayne is now 14 years old but has the mind of a 4 to 5 year old child. He has three sisters who are all healthy--Heather 12, Cassie 5 and Frances 3. He seems to love them all as much as we love him. He has brought us so much joy. Shayne lives with my parents, Warren and Brenda Goodman. They take great care of him, and I am still a big part of Shayne's life.
Thank you for allowing me to share my story.
- Cheryl Trudeau
UPDATE: This history was received last year. Shayne has had a total of three surgeries on his legs. None have proved very successful. Currently he is getting therapy for his legs and also struggling with a reflux problem. If California would have had a comprehensive newborn screening program at the time Shayne was born, today at 15, he might be enjoying normal teenage activities. California still does not screen for MSUD.
I hope my son's doctor is reading this because it really comes from my heart. I would like to say thank you to a very special person, Dr. Susan Winters, from here in Fresno. Dr. Winters, I just want you to know how much my family and I thank God He sent you to us in 1985 when my son, Shayne, was given no hope of living. You were there for me during the most difficult time in my life. Not only are you an excellent doctor but a warm, caring and very loving person. Any patient would be very lucky to have you as their physician. So thank you Dr. Winters, you will always have a special place in my heart.
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