Grace's Story

GRACE’S STORY A Little Girl’s Battle With Autism & Mitochondrial Disease By Shannon Kenitz was “something more” than improper latching, lack of persistence, or inexperience errors. The doctors asked us to come in for some blood work, and the test found that Grace had very high bilirubin. In layman’s terms, Grace was severely jaundiced. After a month of treating her jaundice and several trips back and t htrof t o eht ,bal s’ecarG niburilib slevel fi yllan .dezilamron Like all expecting parents, we were hoping to have a We went on our way, naturally thinking that our lives would healthy child, and with that, the joy and dreams we once get back to normal. had for ourselves, and the dreams our children would find However, days passed and Grace still did not want to eat for themselves. and still was not interested in tracking objects. I once again After the birth of my first daughter, Lily, I felt that nothing made a call to the doctor, only to get a patronizing, “Grace could ever come close to the feelings I had for her. She was is okay, Mrs. Kenitz. You’re over reacting.” It became a my first child, and we went through so many “firsts” together routine. as Mother and child. Like most moms, I started feeling the Two months had passed, and “Maternal Itch” to give Lily a brother or sister with which with over several dozen attempts to play. When Lily was 2, we found out we were expecting to get someone to listen to me, a baby girl, whom we named Grace—a name that has come I finally took things into my to mean more to us than we could have ever imagined at the own hands. I made one last time. appointment to see our family Grace was born a healthy child—or so we thought. We doctor and took with me a journal left the hospital in the usual amount of days for a normal I had started to keep, recording delivery, and headed home to raise our family, having the dates and times of all of no other cares in the world than feedings and changing strange Grace’s eye movements, her dietary intake, as well diapers. sa eht yliad ,enituor gnitsil tahw ecarG did dna did ton .od With me, I also took a book that outlined the milestones And so our story began. After bringing Grace home, it through which children generally progress, mainly as a wasn’t long before I thought that something seemed wrong reference tool. with her. Grace wasn’t tracking objects like Lily had at that point, and Grace had a lot of irregular eye movements, a I remember thinking to myself that I had to find a way .tnemevom htrof dna kcab a ni seye reh fo gnihsup dipar gnihsup fo reh seye ni a kcab dna htrof .tnemevom to get these physicians to listen to me. I constantly had the I also noticed that she seemed to have difficulty with her feeling that they thought me incompetent, as a mother and feedings and wasn’t able to latch on while I was breast Grace’s advocate. In their view, the best thing that could feeding. happen was proving me wrong. And, part of me wanted to be wrong. But, if I was right, then the worst thing that could I made my first call happen would be proof of their neglect—dismissive care to our family doctor and that had been damaging my daughter. Their condescension he thought that I wasn’t was no longer acceptable to me. trying hard enough with the breast feeding. I After listening to me plead my case for over an hour and wasn’t a young mom, by reading my journal, the doctor finally agreed to refer Grace any means, having had to a specialist, not because he felt that anything was wrong Lily at age 30 and now with Grace, but more so to appease a ranting mother—me. Grace at 32. With Lily, eW erew derrefer ot a tsigolorueN dna na .tsigolomlahthpO breast feeding continued well into the age of two, and I I finally felt some relief—something was going to be knew what to expect. Thus, with Grace, I knew that there investigated. Yet, with these new developments, came new Grace’s Story page 1 fears. I started to really get nervous, and the two weeks known for about 15 minutes, our lives began to unravel. before Grace’s appointment seemed like a lifetime. At first, the doctors felt that Grace suffered from a seizure At this time, Grace was now almost 3 months old, she disorder known as Epilepsy. I was okay with that—I had a had lost two pounds, still was not tracking or eating well, friend who had Epilepsy and she was alive living a normal and her rapid eye movements seemed to have become more life. After several attempts to get the seizures under control frequent. Lily was not enjoying her baby sister. As did most and after 3 different seizure medications failed, we were of the family, Lily wondered why Grace never cried and taken to the University Children’s Hospital for a second why her little sister never looked or smiled at her when she opinion—something we did not know about until after would try to play with her. Obviously, this was not what Grace was transferred there. This time we were given a we had envisioned for our family during first few months new diagnosis: “Infantile Spasms to the Brain.” Even the at home. As the appointments drew near, so did our fear of title sounded gloomy and horrible. This meant that Grace’s the unknown. seizures had become worse and that they were being caused Our first appointment was with the ophthalmologist. by an underlying neurological disease, a disease that was Little did we know back then that this doctor would play just as mysterious as the symptoms she exhibited. such an important role in our Grace was immediately placed on the top of a waiting list lives, just for merely believing for a drug involving ACTH (Adrenocorticotropic Hormones) us and for literally ‘seeing’ what injections. The injections were supposed to help control no other doctor wanted to see. her seizures so as not to cause any further brain damage. I The doctor examined Grace for realized that Grace had been having seizures since birth, and over two hours. He read my because they had gone untreated for 3 months at that point, journals and more importantly they now had caused further brain damage to my little girl. he listened. While we were in Grace continued to fail at the hospital. At 5 months, his office, Grace started to do a feeding tube had to be placed in order to help her gain her usual eye rolling followed weight. Grace remained in the hospital for the next year, and by a blank stare—a stare that the stress on our family continued to build. Grace started was cold and distant. to have many other internal problems with bone marrow After witnessing Grace’s eye and blood problems. Leaving Grace for even a second was spasms, the doctor said that what we were seeing in Grace never a choice. looked like seizures. He felt that we needed to meet the I remember the neurologist telling us that there had to be Neurologist directly at the hospital, instead of at the clinic’s an underlying disease for there to be ‘infantile spasms to the scheduled appointment time. The doctor made a few calls brain.’ I realized that I was now in the fight of our lives to and we were out the door, headed for the hospital. push the doctors to find this disease so that Grace wouldn’t When we arrived at the hospital they were waiting for us. die. They rushed us into a private room. We could feel the weight Grace was then one year of the whole situation. Something was terribly wrong with old and weighing just a Grace. The neurologist explained to us that Grace needed to little over 8 pounds. Even have an EEG (Electroencephalography) and MRI (Magnetic with the feeding tube, she Resonance Imagery) as soon as possible, and that we needed was still considered as a to stay calm. I remember thinking to myself, “CALM?— ‘failure to thrive’ baby. That is what I have been doing until now!” Now my fears She had undergone more were materializing before my eyes—something was really blood transfusions than I wrong with my baby. thought possible, and her After several hours of tests, Grace was admitted into the tiny body was starting Intensive Care Unit, and it seemed like hours before we got to shut down. More any answers. The neurologist broke the news that Grace importantly to me as a mom, Grace was a child who was was suffering from seizures, and that they would need to not present. She had no idea how much she was loved, and give her medication to help control them. I had no idea what all I wanted to do was hold her and tell her everything was these things meant or what this would mean to Grace and to going to okay—but even I couldn’t convince myself that all our family. would be well. Looking back to that day, it all seemed so unreal—that at Up to that point, Grace had lived most of her life in the one moment we had all our dreams coming true, and, in the hospital, being transferred from The Mayo Clinic to New same instant, with the proclamation of a doctor we had only York Children’s Hospital.

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