“It took 2 months for her to regain consciousness and when she did – she woke up blind. No one was sure if it would return but at that point it was a victory over what I’d feared most”.
I will try to tell Jade’s story, but I’ve tried to forget a lot about those few months myself. It happened on December 24th 2019 (Christmas Eve). Jade was 4 years old and wouldn’t wake up or respond. She had been under the weather for about 5 days and had an on again, off again fever. We did what the doctor recommended- I had taken her in once to make sure she was okay and as usual they said (alternate Tylenol and ibuprofen) but nothing really seemed to work and her fever never reached over 101. Sometime in the middle of the night it spiked. She didn’t wake up early like her sister and finally when her dad did check on her, (I was in the shower because we were going over to my parents house for breakfast), he got her undressed and told me to hold her under the water. I was confused and knew something was wrong- what I didn’t know is that he was getting our 5 year old ready and a bag packed for us to go to the ER.
I can still feel her lifeless body in my arms as the water ran down us- her eyes barely open. No matter what I did she wouldn’t respond to me… she couldn’t talk or open her eyes. It seemed like years in that shower but it was minutes and then we were speeding to the hospital. I am so thankful her dad was so calm in those moments… it “saved” me.
Her father, myself, and our 5 year old daughter rushed her to the ER where the intake nurse told us she was faking it. After she left the room Jade began convulsing and I had to run out to get help. I didn’t see that nurse again after that.
The staff had to bring her back twice. I didn’t find out until days later because I was trying to calm her sister, Catalina, and try to entertain her (I didn’t want her in the room while this was happening- she didn’t need to see this.) – I am so thankful for the Chaplain at the hospital- she made Catalina sandwiches and colored/played with her so I could go and be with Jade after she saw me in hysterics on the floor outside Jade’s door- trying to comfort Catalina.
After being stabilized they life flighted Jade to Iowa Children’s Hospital where she was immediately sent up to NICU. I’ll never forget her tiny body strapped down and swaddled with blankets. Or the pilot trying to reassure me that everything will be okay. He even let me take a photo of her… In hindsight it must have been… just in case. I’ll never forget saying goodbye to her and praying that on that flight she would make it alive. They warned us not to speed to the hospital (because we couldn’t fly with her) … but we did. How could you not?
When we arrived at PICU no one knew what was wrong. They gel’d her hair down to stick monitors on her head- she was intubated- arm guards on- she didn’t look like my daughter.
I will never forget the multiple “seizures” she would have while unresponsive and my heart would shatter each time. Monitors would go every time and I would convulse into myself with sobs. Every time. It seemed like every 5 minutes her tiny body would break- and I would be yelling for somebody to help her…. But- they always passed. And after each “episode” I would go in the cold hospital bathroom and cry my heart out.
After a very long 5 days we got the diagnosis “ANE” and started rounds of medicine. I can’t tell you how many doctors would be in the room- with us. They filled it. Each one trying to tell me what was going on- but I didn’t know what anything meant- I was in survival mode. The only thing I could focus on was- she might not live. ANE is acute necrotizing encephalopathy.
I remember being so fixated on the “necrotizing” part. I had to google it because I was in such a fog. Death? But why? She was only 4. I couldn’t understand it. Jade was riddled with tubes and unresponsive still…
When the neurosurgeon showed us photos of her brain scan it was riddled with black. This was the final blow. After hearing this I ran to the bathroom and fell to the floor. My mom came in to comfort me and to this day she tells me my cries will haunt her.
They told us to prepare for the worst because if she did wake up- she would be a much different girl than before. It took 2 months for her to regain consciousness and when she did- she woke up blind. No one was sure if it would return but at that point it was a victory over what I’d feared most. My baby was still here.
It took another week once we were released to a different less intensive floor but we were finally able to go home after she passed her eating/drinking tests. She was doing so great! She was sent home with an NG tube to help hydrate her.
Her story also “blew up” nationally and I was interviewed by multiple news stations and had so many people reaching out to me. So many of you were kind and helpful and I still have all your messages saved. I cannot thank the people from all over the world for helping my family during that time. It was our saving grace.
On the other hand… I also had people telling me what a terrible mother I was for letting this happen to my daughter because her ANE was caused by influenza b. So many people believed that I failed to vaccinate her/ that I never did/ etc… I can’t tell you how many hours I spent emailing the 3rd party websites to tell them the truth… but “4 year old goes blind from the flu” has a better selling point I suppose.
I still wonder if I said enough about ANE but at the time I still wasn’t exactly sure of what it was. What I do know is that if the ANE group hadn’t reached out to me… I would be way more lost and hopeless than I am now. I owe so much to all the families affected by this disease. Thank you for being so honest and so supportive.
About 2-4 weeks later, once we were released, her sight began to return, she began to talk here and there- and we were so overjoyed. The NG tube was what we would use to get her hydrated and there’s a little clasp (kind of like a bull) and as soon as that would dip down we were right back in Iowa City. I can’t tell you enough how simply…. Terrifying… everything was. I took no risks. No chances. If it looked off… I needed to make sure she’d be okay.
We got her tested and Jade is positive for the RANBP2 genetic mutation. Today, she is almost 6 and relatively back to “normal.” She is held back a grade because of COVID and because… I wasn’t ready to let her go. I kept her home a year to make sure she was okay but now she’s about to be in Kindergarten!
Every day I continue to count my blessings and hug her a little tighter. My rare disease truth… sometimes it’s hard for me to reach out because I was so blessed that Jade is here and she is okay. But, I will never forget.