The subject line in this photo is a glimpse into what every doctor would say, “This kid is off the charts”.

Life after the ICU was full of question, worry, doubt, confusion, and unimaginable anxiety. We went through multiple doctors in different fields that flat out would not take her case, because they felt like she belonged with a different specialist. I remember being ecstatic that we were going to be seen by the most renowned, high profile immunology doctor around. But after seeing him a few times he said “She does not have an immune deficiency issue, you really need to see a Rheumatologist.”

The truth is she didn’t have any symptoms or test results any doctor has ever seen before, so where does Layla belong in the medical field? We went to a Rheumatologist who said it wasn’t his field either…she was too young. She was the youngest patient he had ever seen. But since no one would accept the challenge, he was willing. He was the only one willing.

During this time, most of our fear was to protect Layla from getting sick. We took her into the ER often for simply catching a cold. One cold lead to a sinus thrombosis (a blood clot in her sinus).  She was hospitalized many times. So, we were under complete understanding that when Layla got sick, she got it bad.

It was a day in June 2014, when Layla started vomiting. We obviously went straight into the ER and straight into being admitted. But this time there was no bacterial infection. I remember watching her lethargic in my arms and begging for God to save her…again…every once in a while she would scream at the top of her lungs, arch her back and tears would roll out of her squeezed closed eyes. Words cannot describe the episodes I was watching unfold. It seemed like she was feeling the most excruciating pain, then after 60 seconds she would fall asleep and was difficult to wake up. All I could do was hold my baby and watch her fear and pain. I kept calling the doctors in during an “episode” and they wouldn’t say anything but once in a while they said it just seemed like she was uncomfortable and tired.  Her doctor had mentioned in earlier visits, that when the inflammation gets bad we can give her a large “pulse” dose steroid. They didn’t want to have her on it consistently because of side effects. At this point we insisted that they give her a pulse dose of steroids.  

“We need to wait to confirm there is no infection, because if there is then the steroid will suppress her ability to fight it,” he said.

This went on for 2 days. Something inside me thought she was having strokes. I have never seen anyone have a stroke, but I knew it. It happened 3 or 4 times in the hospital and I watched her eyes bounce to the right when she was between episodes.  I don’t know how to explain the feeling, but I knew something wasn’t right.

They took her to do an MRI and at that time Rob and my Mom felt like it would be ok to get lunch at the cafeteria (since this procedure takes 2 hours). Half way into lunch, the doctor came to find us. We talked for a few minutes about her status and then he says, “We do all we can, but sometimes we can’t save them all.” I don’t think he knew what this, seemingly simple comment was going to do to us. It felt like he was giving up. The one doctor willing to take her case, was giving up.

The world literally started spinning and I cried so hard I had trouble breathing. I lost it, I lost my mind. I don’t remember much, but I know Rob and my mom carried me out of the cafeteria. I remember seeing other people having lunch, smiling, laughing, discussing plans. All I could think about was, “No! the world cannot go on without my Baby.”

Once I gained my strength I ran to where Layla was.  Bursting in the room I yelled, ” Give me my Baby!” crying with every word. She was sedated for the MRI and I didn’t know if she was going to wake up. She did. She woke up and they called me back to see her. I held her and promised to never give up on her, to never let anything happen to her.

When we got back to the room, I demanded a pulse dose steroid and they gave it to her. After that was in her system, she never again had an episode. But even though it stopped, she seemed different. The look in her eyes seemed un-attached, she wouldn’t eat or drink, she wouldn’t even lift her head. It seemed like our dancing angel had lost her motor ability.  Of course they just said she was weak. A few more days into our stay, our Doctor came in to tell us that her MRI had showed multiple lesions in her brain (basal ganglia). They said she had substantial brain damage (caused by inflammation in her brain). I died over and over at that moment. Even though I knew something bad happened, hearing the confirmation was destroying. It was too late…it was too late to hear them confirm what I kept telling them. What if they would have listened earlier? All the horrible guilt and pain took over my thoughts:

What if I could have made them understand what was happening…

What if we would have given her the steroid sooner…

What if I would have yelled a little louder…

Her whole life was changed in one day. But what if I could have done more?

~Life With Layla Rae