Friday, March 13, 2009

A Living Hell

In late November 2008 my daughter Lyla, then about 3 months old, began having a problem eating. Up until then, she had been a very vigorous eater. She was exclusively breastfed and seemed to enjoy every minute of it. Even when she was only hours old, she loved to eat and had very few issues latching on. I evaluated everything, changed soaps, changed feeding positions, monitored changes that may have happened in my diet or exercise level...everything that I could think of that could be affecting Lyla's desire to eat. Nothing was changed- nothing was helping and nothing was different than it had always been. But she was growing more and more disinterested in eating and additionally growing weaker by the day. I tried feeding her with a bottle, tried feeding her formula, I tried everything and still nothing was working. I was worrying myself like crazy and growing tired of being a detective. My mind could think of nothing else. Lyla's condition had continued to decline. I had to take her in to see a doctor-I could do no more and was growing more worried.

After one ER visit and two doctor's visits, Lyla had lost three of her fifteen pounds. Finally on the second visit to her pediatrician's office, Lyla was seen by another physician in her pediatrician's group. This physician looked at Lyla, lifted her arms and released them....they fell to the bed. She lifted Lyla's legs, they also fell. Lyla was practically motionless. She had no strength, no muscle tone, no Lyla left in her. She was floppy when held, like holding a rag doll. Lyla was weaker at that moment, than when she was first born. She was not crying any more, she was just nothing. She had become expressionless. No smiles, no nothing. Lyla's eyes were dark when they were normally the brightest of blue. She was different, and until then only I could see it.

I stood there, holding my breath waiting for the doctor to tell me that Lyla was just fine, she must have a virus. The doctor looked at me sadly. Just then, all the air I had been holding released and I felt tears welling up in my eyes. I was worried, but most of all I knew that something was wrong all along and was relieved to finally have someone else agree. The doctor did not tell me much. She told me it was not my fault. That what she suspected was wrong with Lyla was there all along. Lyla had been born with it and now, I needed to get her to the hospital immediately.

Over the next three and a half weeks my family and I endured the worst experience of my life. The physicians monitoring Lyla had little information though the testing was endless. They collected many stool samples, drew blood work sometimes several times a day. My poor baby, Lyla had very little veins to choose from upon her hospital admission and the longer she remained there, the worse they got. They did an MRI on her brain and she had a spinal tap. I was finally told that one of Lyla's physicians suspected Infant Botulism and I was questioned endlessly about Lyla eating honey. Although she had never eaten honey, her symptoms seemed to point in that direction. I did research online from my phone while in the hospital and was glad to read that these cases can be life threatening but the children recover over time with treatment, monitoring and hospitalization. I was glad and hoped for Infant Botulism, not because it was fun or easy on Lyla, but because there was, in most cases, a full recovery.

Then on Christmas Eve, about ten days into her hospitalization, one of Lyla's physicians told me that they no longer believed Lyla had Infant Botulism. Upon examination, Lyla did not present with some of the cranial nerve palsies that are a tell-tale sign of Infant Botulism. The physician told me that Lyla most likely had a rare chromosomal abnormality called Werdnig Hoffman disease. He further told me that babies with this disease most often die before their first birthday. They never sit up, they never crawl, they do not ever recover. My heart just ....broke. I could not breathe. I just stared at him and felt a knot building in my throat. I tried to swallow, but it would not go away. And in that instant, I experienced the greatest pain I have ever felt in my life.

I sat in that hospital room, never leaving. Day in and day out, looking, hoping for something- some little movement, some smile, some something that would convince the physicians that they were wrong. I hoped. I prayed like I have never prayed before. I have not been a stranger to prayer, but these prayers were different. These were all the hope that I had. I had nothing else. Nothing that I could do would change this outcome. There was nothing. So, I turned to God.

When life seems at its worst and you are in the middle of a huge storm...the only thing that is never changing, never swaying and always there is God. I believe that now, as I did before Lyla's illness and as I will continue to believe.

I could not function. Why Lyla? Why my little girl? What is it that really happens when you die? What will happen? Will she suffer? Will she be in pain? How can I help her through something that I fear for myself? How can I make this better on her when I cannot fathom my own death, let alone hers? I tried to bargain with God, although I know it is wrong. I wanted to go instead of her. I wanted so much for this not to be her fate. And then, I asked myself with tears rolling uncontrollably down my face, what do I dress her in if I know she is going to meet Jesus? Until then, she had very few things that I would deem appropriate.

I prayed all that Christmas Eve night, there alone in the room, just Lyla and me. I held her hand and brush her soft white-blond hair to the side as she slept soundly. I thought back to when I first found out I was pregnant with her. I remembered how that day, I walked down the stairs sobbing, holding the positive pregnancy test in my shaking hand, looking at my husband who was sitting across the room. My husband smiled; but, I was horrified. Jacob, my youngest son, was only 8 months old and I was not ready to have another child. I was still getting used to having two. I felt guilty looking at Lyla there sleeping in that hospital room. Now, at that moment, more than anything, I wanted my little girl.

The next morning I awoke to the normal ruckus of the hospital. Nurses in and out. Housekeeping sweeping and mopping the floor, etc. I wandered around the room with tears in my eyes most of the day. I said a couple more prayers. Then, the door opened and it was a thin white older lady. She introduced herself and squeezed my hand. She was yet another doctor, the third neurologist to see Lyla. Yet, she was different. She did her own evaluation of Lyla, most of which I had seen others do. But, she turned and said, your daughter does NOT have Werdnig Hoffman disease. She pointed out small details about Lyla that made her question the diagnosis. This physician had extensive experience with these types of patients and was quite sure that Lyla's case was not one of Werdnig Hoffman. Then, the woman reached out and hugged me. She left and I was silent. Sitting, wondering....

Over the next week, Lyla began moving. Not big movements, but she was improving. One of the pediatricians came into the room, saw Lyla and told me that her improvement was the very last thing that he had suspected would happen. He told me something I will not forget, "If Lyla makes a full recovery, go play the lotto".

A week later we were on the way home. Lyla still had an NG tube in place for me to feed her should she stop eating again, but her status was looking up.

We walked into the house, the boys screaming and hanging off the rafters like wild hell children and I didn't mind one bit. It was good to be home.

Lyla has continued to improve and is now considered a perfectly normal little girl. She is seven months old and sits unassisted, eats jarred foods, tries to feed herself with her spoon, and plays wildly in her play gym, rocking it to and fro.

All testing returned negative results and Lyla's illness continues to remain a mystery.

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