Norah’s Story:

Our daughter, Norah 14mos, was scheduled for a g-tube (feeding tube in her belly) placement on July 17, 2015 and we were assured that it would be a quick, easy surgery. She was admitted the night before her surgery for IV sugar to prevent hypoglycemia. The night was uneventful and her surgery was first thing in the morning. We met with anesthesia and saw her surgeon. Anesthesia went over everything, including the "rare and scary" and of course said he doesn’t anticipate any of that as she has no history or family history of it. He was more concerned about going into surgery with a little lower sugar (which was my concern...ensuring her blood sugar stay stable throughout the procedure) and explained he would give her a bolus of sugar once in the OR depending on her glucose level...I signed the consents, snuggled Norah as she was given versed and then kissed my smiling baby as I handed her over to an anesthesia nurse. I waved as she smiled over that nurse's shoulder as they disappeared. I was then shown to the family waiting room, where her surgeon would come and get me in about 40-60min.

    I texted people to let them know she had been taken and her surgery would be under way within a few minutes. I walked to the local coffee shop in the hospital to get a coffee while I waited. Back to the surgery waiting room I went. I picked a chair over in the corner, furthest away from the door, settled in with my phone, magazine and coffee. A few adult ladies (sisters I learned) made small talk with me as we waited. The coffee was awful and as I would soon learn, as I sat there debating whether I had time enough to walk back and ask them to remake it, my sweet baby was fighting the fight of her little life. 

    At almost 45 minutes on the dot, the nurse practitioner working with Norah's surgeon came to the door of the waiting room. She didn’t come in. She asked me to come out. At first I thought "Wow, right on the dot, amazing!" As I got closer, I noticed the expression on her face and when she asked me to step into the tiny little room beside the waiting room, my heart sank. I knew something was wrong. I followed her into that tiny room and sat when she sat. She said "We have not even gotten surgery started; Norah developed a complication of anesthesia. When we know more, we will update you. She has a lot of people working to stabilize her; she is the priority patient in the hospital. Do you have someone you can call?" Then she rushed back to that OR where my baby was fighting to live. I couldn't breathe, I couldn't move. It felt like that tiny room was closing in on me, suffocating me. I called my mom; I couldn't get my words out. I couldn't stop crying. Back in my chair in the far corner of that big waiting room, those three ladies, strangers to me, offered words...this kind of stuff happens a lot, don't worry too much, don't work yourself up...I just nodded and cried out silently to my God. Please don't take her. Please be with her team and all of those working on her. Please, please, please, I need her.

    After another hour or so, her surgeon herself came out. She too, took me to that tiny room...where I didn't want to be. She explained to me what was going on and it was then that I first ever heard that horrifying term "Malignant Hyperthermia." She explained that Norah had a rare complication to anesthesia. She explained that they were doing everything they could for her and truly it was up to her and time. She said once they could get her stable, she would be transferred to the Pediatric Intensive Care Unit (PICU) and she would be on a ventilator which was breathing for her. She too had to get back into the OR to my sweet little girl. Social worker came, clergy came by too. I was brought to the PICU to wait for Norah. Waiting yet another hour in the sterile room they called hers, I was antsy to say the least. Finally, a PICU nurse came and started doing stuff in her room; Norah was on her way over!! I didn’t know what to expect. I did not expect 17+ people to come with her and all of these machines beeping and attached to my baby. I was physically sick. I wanted to scream and rip my baby way from all of this and go back home...to have never ever consented to this...turn back time. Wishful thinking. This was the reality...my baby had to be cooled to the core. My baby had received an abundance of the antidote, Dantrolene. She was on a machine that was breathing for her. I learned what "A lines" were as she had two of them...one in each wrist. She received another dose of Dantrolene in the PICU when her temp climbed high again. 

    The anesthesiologist handed me this little piece of paper with "www.mhaus.org" and (Malignant Hyperthermia Association of the United States) written on it. I clutched onto that piece of paper like it was the lifeline to Norah. He told me that he had called them in the OR all while helping Norah fight to live... He explained that he had never encountered MH in his career....(as I learn that is the same for everyone that learns Norah had MH...they’ve heard of it, prepare for it, but have never actually had it happen). Norah was transferred to The Medical Intensive Care Unit at Boston Children's Hospital. She stayed for about two weeks and even after going home, it took a long time for Norah to get back to her baseline...her ordeal caused to her to regress, lose motor skills she had fought hard to gain prior to this and most of all it took the longest time for that look in her eyes to leave permanently...for those big brown sparkly eyes to return and never leave. For the ghostly, gaunt look to be gone forever from my brave little fighter. For her spunky little self to be back. "Though she be but little, she is fierce...." Never again do I want to endure a day like that, or would I wish anyone else to go through a day like that...The day I almost lost my little nugget. 

I've attached a few pictures...the first two are in the PICU after the OR, before even being transferred. The second one is the little piece of paper that the anesthesiologist wrote on for me. The second to last one is a month post MH, and the last is just a few weeks ago. Norah is a miracle. She is an MH Survivor!

*UPDATE* - July 17, 2018 -"Today is our sweet Norah’s three yr live-aversary!! Thanks to the quick thinking and acting of her team that terrifying day, she’s here with us!!!"

Norah finished her first year of Preschool! 

Thank you, Lacey Anderson...Norah's mom.

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