Medical Executive Committee
Boston University Medical Center
80 E. Concord St.
Boston, MA 02118
Dear committee members,
I don’t believe that my son would be alive today without Dr. Holick. In March of 2018, my family was falsely accused of having abused our three month old son, Quincy. My husband was arrested and charged before the accusing doctor had even seen our son. When Quincy didn’t get better, my pleas were ignored by his pediatrician, and the accusing doctor. When he saw Dr. Holick in July of 2018 he had completely stopped growing and I was afraid that the doctors at Arkansas Children’s Hospital were going to let my baby die in my arms.
Due to conception problems that seem to run in my family, I was worried that I would have a hard time getting pregnant. My grandmother had stillborn twins before my father and needed fertility treatment for at least two of her four pregnancies. One of my aunts was never able to conceive. Another aunt suffered from early menopause and was only able to have one child despite trying for more than a decade. My husband, Zachary and I really wanted a baby. When other boys wanted to be firefighters and doctors, Zachary wanted to be a dad. When we got the car seat and installed it in our car, he would gaze at where the baby would be once he was born. Zachary was meant to be a dad.
While we were thrilled to be expecting our son, my pregnancy wasn’t easy. I had had frequent dislocations my entire life, but for the first time I started having trouble with my hips. My right hip hurt constantly and my left one would suddenly dislocate and I would fall. I was only nine weeks pregnant when this started. My obstetrician sent me to a physical therapist. After asking me to do a series of stretches similar to the Beighton Scale, she observed that I was extremely flexible and suggested that I might have Ehlers-Danlos syndrome. I didn’t think much of it at the time because being extremely flexible runs in my family. We have been entertaining people with what we call “parlor tricks” for generations. Despite physical therapy, my hips continued to get worse. I eventually needed a walking stick to go anywhere by myself and Zachary frequently had to carry me to the bathroom.
Quincy was due December 16th. My doctor and I chose induction because I lived a significant distance from the hospital. I would have to pass two closer hospitals and there was construction that would block off the easiest route to the hospital. Both my mother and husband worked so I might not have anyone available to drive me to the hospital if I went into labor at home. I went into the hospital on December 17th to start the induction. I signed all the paperwork including my preference that Quincy be put on my stomach while being cleaned up. As my labor progressed, they started the epidural. Unfortunately it didn’t have any effect. By the time I was ready to start pushing I was already tired from the epidural failing. My obstetrician, Dr. Chang asked Zachary to help him, so I only had my nurse, Jo to hold my hand during the birth. Quincy kept rolling over during birth and Dr. Chang would have to stop and reposition him. Eventually I was getting so tired that Dr. Chang asked to use vacuum extraction. He used the vacuum three times before Quincy was born. He was in such bad shape that we didn’t get that skin-to-skin contact that I had signed for that morning. He wasn’t breathing on his own and when he tried to breath, his stomach was being sucked up under his rib cage. After several minutes, where no one was telling me what was happening and I couldn’t see Quincy, he was handed to me. I was horrified. His face and head were bruised and swollen. He was gasping for air and looked distressed. I handed him back immediately, begging for them to help him. Quincy was taken to the nursery and given a nasal cannula for an hour. This picture also shows what was later identified as a rib fracture on the right side of his rib cage. Zachary took this picture when Quincy was about eight minutes old. Nobody but the doctors and nurses had held him yet. The broken rib in this picture was identified in April by a doctor at Arkansas Children’s Hospital and didn’t heal until Quincy was about a year old.
After Quincy was brought back from the nursery, I breastfed him and put him in the bassinet next to my bed. Zachary had gone back to our house to let our dogs out before coming back to the hospital, so it was just me and Quincy. Zachary hadn’t had the chance to hold him yet. A few minutes after eating Quincy turned his head and looked right at me, before throwing up an incredible amount of milk. I was shocked and panicked. I immediately called for the nurse who came and helped me clean him up, get him dressed in dry clothes, and dry bed sheets. Quincy would continue to vomit after almost every feeding for months.
While we weren’t told this at the time; I read it later in his medical records from birth, Quincy was diagnosed with a cephalohematoma “due to birth injury.” I believe they probably didn’t want to alarm me with why they wanted to monitor him.
After we went home, Quincy’s weight dropped quickly. The vomiting was frequent, but he seemed to not be bothered by it. It took over a month before he was able to regain his birth weight. Quincy smiled for the first time at three weeks old. He was an incredibly happy baby. He loved people. Even after throwing up, he would often smile. People frequently described him as one of the happiest babies they had ever met. And he was. Minus the throwing up and all the worrying I did about his weight, he was such a laid back, sweet baby. He rarely cried, and when he did, it was because he was hungry, needed his diaper changed, wanted to be held, or was sleepy.
Just after he had regained his birth weight, at five weeks we took Quincy to his pediatrician. I had noticed he was having trouble breathing through his nose while feeding but wasn’t able to get much out with the suction bulb. She sent us to Arkansas Children’s Hospital to clear out his nose and make sure he didn’t have the flu. Since I work from home I had been caring for him while Zachary went to work. We had been very careful about the flu. Arkansas was having a bad flu year and Quincy was too young to be vaccinated. A young boy that I knew had died from the flu just before this and we were scared. We had taken every precaution to protect him. We had kept him inside except for his weekly visits to the doctor for weight checks and Zachary changed clothes and took a shower when he came home from work everyday.
At the hospital they diagnosed him with a virus, but admitted him due to his weight. He stayed at the hospital for three days, where they weighed him before and after each feeding and I fed him every three hours. The first morning a nurse came in with a dropper and told me she was going to give him his medicine. He wasn’t on any medicines at home so I asked her what it was. She told me it was vitamin D drops because he was breastfed. This was the first time I had heard that he needed vitamin D supplements. His pediatrician had never mentioned it. After he was discharged we had some trouble finding vitamin D drops for infants, so he didn’t start taking them regularly until he was about seven or eight weeks old.
On his last day in the hospital, a nurse tech came in to weigh him before his feeding. Quincy turned his head and threw up on her. She put him back in the crib and left. A few minutes later, the doctor came and told me she was diagnosing him with GERD. No tests were performed. He was given a prescription for Zantac and discharged. His vomiting and weight problems continued despite the Zantac. I was told over and over again, “All babies spit up.”
At Quincy’s two month checkup, I asked his doctor about how he would scream when his legs were lifted during diaper changes. She claimed that this was normal. My mother, a retired kindergarten teacher, said that she had never known a baby or child to scream like Quincy did during diaper changes. Dr. Clinton said that me and all of the other babies were the “weird ones then.”
We started taking Quincy to WIC in February. They would weigh him completely naked and provided a lot of help with breastfeeding, including giving me a breast pump so I could more accurately measure how much he was eating. After monitoring his weight for a few weeks, they noticed he wasn’t gaining much and told us to take him back to the emergency room at Arkansas Children’s Hospital on March 22nd.
We were seen by a doctor named Renee Willis. Zachary and I were in the hospital room with him, while my mother and our pastor, who had heard Quincy was at the E.R. again and had come up to offer his support, stayed in the waiting room. Dr. Willis wanted to increase his Zantac dosage and send him home. I felt something else was wrong and that she was blowing us off. I asked Zachary to switch with my mother (only two adults were allowed in patient rooms) to see if she might take an older adult more seriously. They didn’t provide a crib for Quincy during this visit, so I sat on the gurney with him on my lap. I needed to move him. I placed my hands around his chest and started to reposition him. He looked at me and screamed. Both me and my mother were alarmed. The nurse down at the nurses station heard it, but didn’t seem to think anything of it. Quincy was discharged later that evening and given an appointment with his regular pediatrician for the next day.
The next morning, we met with our pastor to discuss Quincy’s baptism. Before my baptism, my grandmother had sewn a baptismal gown for me. It was later worn by two of my cousins for their baptisms. My grandmother had died in 2015 and this would be the first time since her death that the gown would be worn. Quincy sat on my lap during the meeting, smiling at Pastor Carlos and happily cooing. After he left, Zachary changed Quincy’s diaper and we got in the car to go to his doctor’s appointment. Quincy fell asleep in the car, he had missed his nap due to Pastor Carlos’ visit earlier. I drove, Zachary was in the front seat next to me, and my mother was in the backseat next to Quincy. I pulled up to the entrance, Zachary carried the carseat in and my mother went with them while I parked the car. When I joined them, Quincy was still asleep. He only woke when I got him out of the carseat to be weighed. I had dressed him in a onesie that had a polo-style sleeve. It wasn’t tight, but it would have been noticeable if there had been any swelling.
He was seen by a nurse practitioner that we hadn’t met before. Shortly into her exam she said, oops. Zachary and I stood up to see what had happened, she immediately waved us back and said it was nothing, her hand had just slipped. A few moments later, she said that something was really wrong and that his arm was swelling and he wasn’t moving it. Quincy was sent for x-rays there in the office. They didn’t show anything, but we were sent back to Arkansas Children’s Hospital to see an orthopedist.
At the hospital, we were again seen by Dr. Willis. Quincy’s weight was conveniently placed exactly at the 50th percentile. It wasn’t anywhere near that. We were told that the x-rays taken by the doctors office were blurry. We gave them permission to take him to x-ray the arm again. They did a skeletal survey without our permission or telling us what they would be doing. Quincy wasn’t allowed to eat, because they were planning on doing a surgical reduction of the fracture on his left elbow that the nurse practitioner had caused. I asked for a breast pump, but they were all being used. Not being able to feed or relieve the pressure is extremely painful. At this point we didn’t know that they suspected abuse, so Zachary asked his father to take him back to our house so he could bring me my breast pump from home. In the meantime, Dr. Willis came in and put an x-ray of one of Quincy’s legs up and demanded to know how it had been broken. I had no idea. I couldn’t see anything in that x-ray that looked like a fracture. She said he had about 30 fractures. I thought there had to be a mistake. Shouldn’t he be in pain? Screaming? Why wasn’t there bruising around the fractures? None of it made any sense. My mother and I started crying and Zachary held me and tried his best to comfort me. None of us were allowed to touch Quincy, who was the only one of us not crying.
Shortly after Dr. Willis left, a burly male nurse brought a chair and sat outside our door. I turned to Zachary and said “Oh my god, they think we hurt him. They actually think we hurt him.” We talked to a social worker who told us that he was making a hotline report, because we didn’t have an explanation for his injuries and they had to take every precaution. I thought that was reasonable, surely they would find out what was really wrong and everything would be fine. I didn’t know that a doctor named Karen Farst who wasn’t even at the hospital that night had already made a diagnosis of Non-Accidental Trauma.
They didn’t ask any questions about Quincy’s medical history, or our family’s medical history. We were asked questions about our education and work history.
My father in law arrived, and after giving me a quick hug (I was still crying), assured me that he and Zachary would be right back with the pump, my mother’s medicine, and everything else we would need to stay the night with Quincy in the hospital. Shortly after they left, two officers from the Pulaski County Sheriff’s showed up. They asked where they could find Zachary. I told them he had gone back to the house for some supplies. After telling them what kind of car my father in law drives and how to find our house, I heard them cheering in the hall outside our room saying “we got him!” Zachary was arrested about an hour after Karen Farst made her diagnosis without ever seeing him.
They got me a breast pump a little while later. I huddled in a corner with it, since that male nurse was still the doorway. Quincy hadn’t eaten since the doctor’s visit several hours earlier. They gave me a bucket of ice to put the tubes of milk that I had just pumped in. Shortly before they took me to the sheriff’s office as well to be questioned, they decided that they would do the surgery in the morning and Quincy could eat. They got a little two and a half ounce tube of milk out of the ice and gave it to him. I asked if we should run it under warm water before giving it to him. The nurse that was feeding him said that if he was hungry enough he would eat it.
Quincy hadn’t been given any type of pain medicine. After eating he was happy and smiling. He even shook the investigator’s hand. They took lots of photos, particularly of two spots on his cheeks that they claimed were bruises. They hadn’t been there the day before and were gone by the time he had his surgery the next day. They looked like smudges of dirt to me. While I bruise easily, as does my mother, grandmother and everyone else in my family, I don’t believe these marks were bruises. I think they were caused by me holding his head wrong while breastfeeding. None of the women in my family had breastfed and the lactation consultants (four of them) that I had seen up to that point hadn’t pointed out that I should have had my hand behind his head rather than under his cheek until the WIC appointment the previous day. I had never seen a bruise that appeared and disappeared within 24 hours.
I asked to stay with my son. I didn’t want to leave him alone in the hospital. The investigator said that he would allow my mother to stay with him. I wasn’t handcuffed, but I was patted down in the E.R. parking lot. Zachary was already in an interrogation room when I was brought in. We could hear each other’s interrogation through the wall. I have autism. I understand that I have difficulties communicating and understanding other people because of my condition. I also know that Arkansas has a disability resource center that provides advocates for people with disabilities like mine in situations where they are being questioned by the police. I asked for this advocate at the beginning of my interview. Investigator Bryant, a large, intimidating man claimed he didn’t know what that was. My aunt Marcella is good friends with the sheriff at that time, Doc Holliday and his second in command. She asked the second in command about why I wasn’t given an advocate when I asked and was interviewed anyway. He was horrified. He also has a child on the spectrum and was appalled that Investigator Bryant had claimed that when he absolutely knew what I was talking about.
During my interview, I was told that Quincy’s brain was mush and that he had been shaken, despite not having any neck injury and the hospital saying that the brain bleed was old and likely from the vacuum extraction at birth.
Zachary could hear me crying through the wall. After being asked the same questions over and over again, he started repeating Investigator Bryant’s suggestions. At one point Investigator Bryant says, “maybe you got frustrated and picked him up by the arm.” A few moments later, Zachary says he picked him up by the arm.
Investigator Bryant came back and took me outside, away from the cameras, and told me that Zachary had confessed and a bunch of stories that Zachary had never actually said, such as he had gotten the rib fractures from Zachary slamming him down on our bed and squeezing his chest. Quincy only had fractures on the back of his ribs and the one from the picture on his side. If he had been squeezed like that, it seemed odd that there were no fractures on the front of his rib cage where Zachary’s thumbs should have been.
Since Zachary had left the hospital earlier than me, he didn’t know that Quincy was acting normally. Investigator Bryant implied that he was in bad shape, possibly even dying. Not knowing if his son was going to live or die and being able to hear his wife in the next room crying and terrified, left Zachary particularly susceptible to a false confession.
After Zachary was handcuffed and marched out past me, I was taken back to the hospital. Investigator Bryant explained to social work that they had cleared me and requested that I be allowed to be with Quincy. When they finally let me into his room on the third floor of the hospital, we still had a sitter. I didn’t sleep that night. I lay next to Quincy and watched the clock for the rest of the night.
Quincy was scheduled for surgery at eight the next morning and wasn’t allowed to eat after midnight. The surgery kept getting pushed back. I had to do an interview with the Arkansas State Police Crimes Against Children Division. This investigator asked me if Zachary had abused me too. I was shocked. I had never known Zachary to handle his problems with violence. He has never hit me or shown any signs of violence or even seemed frustrated.
When I got back to Quincy’s room they were about to take him to the operating room. It was about 1 p.m. when they started the surgery. Quincy had only had that small two and half ounce bottle of milk in 24 hours. I can’t imagine not feeding a three month old that little. In particular, a three month old who was struggling so badly with his weight.
The surgeons, Drs Songy and Schaleben, told me after the surgery that the fracture to Quincy’s left elbow was extremely recent, less than 24 hours old at the time they did the surgery and that there was another fracture to his right elbow that was close to four months old (he was only three months and six days old). 24 hours earlier, we had been on our way to Quincy’s doctors appointment. In the time between about 1:00 p.m. the day before and when the swelling started, Zachary had never directly handled Quincy. He had carried the carseat, but Quincy was asleep and had stayed asleep. There was no swelling when I undressed him to be weighed. The nurse who weighed him didn’t notice a problem. The surgeons said that the swelling would have started immediately and would have been noticeable within about two minutes of his arm being broken. I don’t think she meant to do it, but I know the nurse practitioner broke his arm when her hand slipped.
During Quincy’s stay at the hospital, the number of fractures kept changing. Some doctors saw more, some saw less, they would change places. I started asking for a list of all the fractures and their places and ages so I could keep up. I was told no, because there were some that were only listed in the police reports. I asked four times for them to check his bone density. While I hoped that Quincy would get better, I couldn’t shake the feeling that his bones had to be weak, after all everyone knows that babies have flexible bones so they don’t break during birth. How could my baby have had broken bones even before he was born?
Later that day, we finally met Karen Farst. She gave Quincy a thorough exam, and by thorough I mean she opened the wrap they had him in, nodded her head and closed it again. She wasn’t in the room for five minutes. Part of her report included that she wouldn’t change her mind about this diagnosis, even if testing showed he had something else.
On Sunday, I left Quincy with my mother and went home to feed our dogs and take them out. They hadn’t had anyone to care for them since Zachary had been arrested on Friday. I sat in our bedroom and cried. It was so overwhelming to be in the home we had built together, to see Zachary’s clothes in our closet, our son’s crib by our bed and know this perfect life that we had had was gone. I believed Zachary would never come back. Quincy would never know the father who had loved him so much. When I got back to the hospital with the supplies that Zachary and his father had gone to get, Quincy wouldn’t let me out of his sight. If I even went to the bathroom, he would scream. My happy, easy going baby was gone and in his place was a baby who couldn’t let me out of his sight.
On the 26th, Zachary had his first arraignment and Quincy had an MRI. While I wanted to go with my father in law to the arraignment, I decided that Quincy was more important. I was cleared to go with him to the MRI and stay with him to keep him calm. While we were waiting in the intake area, a doctor came in and started yelling at me that I shouldn’t ever see my son again and that I belonged in jail with my husband. Quincy started crying as he chased me out still yelling. I saw him again when he was about to testify against my husband in court. His name is Dr. Glasier.
Quincy was discharged that afternoon. He broke out in a huge, heartbreaking smile when we loaded him in his car seat and he realized he would be going home. Before taking him home, I was told that he would stop throwing up, his growth would be normal again. I was thrilled and hopeful for the first time and furious with Zachary. I told my father in law that he was lucky to be in jail, because I wanted to kill him for hurting my baby. I would have given anything for Quincy to get better.
Also on Monday, all of the major news stations and papers ran stories on our case. Our home address was published. We started getting death threats, including from two nurses at Arkansas Children’s Hospital. One of our dogs was stolen, another was poisoned. I was terrified to leave my house and even more terrified to take my son back to Arkansas Children’s Hospital. Every time he had to go back, I called to make sure that neither of those nurses would be allowed around him. I didn’t know if they would try to take him or hurt me.
Quincy kept throwing up. I kept telling myself that it will stop soon, he’ll get better. Zachary’s cousin Ashley kept sending me messages asking how I could have not noticed that Zachary was abusing him. At first I ignored her. She didn’t understand. Then I realized that she was right. I was breastfeeding, I worked from home, I was always with him. How could Zachary have had a chance to break so many bones in his tiny body without me noticing? I’ve always prided myself on being extremely observant, so how could I miss this?
My social skills coach and good friend, Yada, was the first person I had called when we were first accused. She has a son about my age who is also on the spectrum. She suggested that Quincy might have Osteogenesis Imperfecta. When I asked her how he could have so many broken bones and still seem so happy, she suggested that he probably didn’t know any different; he had always felt that way so he didn’t have a reason to cry.
When I next took Quincy to the pediatrician, I asked for a referral to a geneticist to test for OI. I wanted to be absolutely sure. I needed to know that there was absolutely nothing else that could be causing this. He hadn’t been tested while in the hospital. Dr. Farst had never ordered it. The doctor’s office couldn’t draw blood to run the test. They even called the best nurse from the hospital over to do it, but still they couldn’t draw blood from a baby that bruised so easily.
Two weeks after I brought him home, I had to take him back to Children’s for a second skeletal survey. They had only told me about the appointment with Dr. Sachleben afterwards so I was late for x-rays. They took him back and made me wait outside. I could hear my baby screaming on the other side of that door but I couldn’t do anything to help him.
After the appointment with Dr. Sachleben, we were told to wait for Dr. Farst. She never showed up. Finally I was told to wait for the patient shuttle that would take us to her office. The shuttle never came. Eventually, I looked up where her office was on Google maps and walked there with Quincy in his stroller. Karen Farst still wouldn’t see us. She finally sent another child abuse pediatrician to see us instead. She introduced herself as Dr. Rachel Clingen, her name is actually Clingenpeel. She assured me that Quincy would stop being so clingy soon and that he wouldn’t remember any of this. I pushed for that OI test. Dr. Clingenpeel ordered it and they collected it that day.
A few days later, I started to wonder what the results of the follow up skeletal survey were. I called Dr. Sachleben’s office. They told me to call Dr. Farst’s office. Dr. Farst’s office wouldn’t answer the phone, so finally I went to Children’s Hospital. The receptionist at her office told me I’d have to get the results from Medical Records “if [I] can.” I’m not a doctor and I can’t read x-rays. I got the records and had very little idea of what I was looking at.
I still believed that they would see this wasn’t abuse. Quincy kept getting sicker and sicker. He stopped growing. His growth chart had leveled out. I was panicking. You can see this on the growth chart to the left. The fake weight that they gave him the day we were accused is at three months. He gained very little weight and fell off the chart until about eight months when we saw Dr. Holick.
After they weren’t able to draw blood for the OI test, I changed Quincy’s pediatrician to one that was highly recommended, supposed to be one of the best, and just happened to be at our accusing hospital. Dr. Hannah Beene did not live up to her reputation. At one point, I was frustrated. My son was struggling to gain weight from the constant vomiting. I had been asking for a referral to GI since before we were accused. I have cyclic vomiting syndrome which is believed to pass on the X chromosome, meaning that all of the children of an affected mother will also be affected. My father is dying from Crone’s disease. Both sides of Quincy’s family have Irritable Bowel Syndrome. GI should have been all over this mess by now. I was told by Dr. Beene that she wasn’t concerned because, “Dr. Farst thinks it’s abuse and that’s good enough for me.” I left the office that day with the realization that these doctors didn’t care for my son. They cared more about this diagnosis, that didn’t take anything about him into account. They would send my perfect sweet baby home to die in my arms.
The OI test had come back negative, but I knew they had only checked four types. When I had first brought Quincy home, I had been sitting on my bed afraid to hold him, because I thought he would break again. He was lying in his crib, crying to be picked up and held and I wanted more than anything to hold him, but I was so afraid that I would hurt him. After all, I had held and not known he had all of these fractures. How could I know that I hadn’t somehow caused them. I called the OI Foundation. They directed me to a set of instructions on their website on how to handle infants with OI to prevent hurting them. It included dressing them in loose clothing and lifting them by the butt to change diapers, scooping them to pick them up rather than lifting them under the arms. I could finally hold him again. They mentioned that he might not have OI, but it sounded like he might have a related connective tissue disorder.
I began researching differential diagnosis of child abuse. I knew Dr. Beene and the other doctors wouldn’t help him and I was desperate. I needed him to get better no matter what. I found a list of different symptoms that are frequently diagnosed as child abuse and what else cause those symptoms. On that list under almost every symptom Quincy had had was a name that was familiar from my physical therapy: Ehler’s Danlos Syndrome. I searched for anything on infants with EDS and fractures and came across Dr. Holick’s paper. I knew Quincy needed to see this doctor.
After reading accounts of other parents and realizing how similar our stories were, young babies with undiagnosed health problems, a rush to diagnosis by doctors and law enforcement, continuing symptoms, I emailed Dr. Holick on June 11th. The next day at 2 in the morning he replied that he would try to help if he could and I should schedule with his assistant to talk to him on the phone. As the time for our phone conference approached, I got so nervous. What if he was like all the other doctors who would look at Quincy’s symptoms, would look at everything we had tried to help him. I sat in the rocking chair with Quincy on my lap, telling him that this would be okay, we were going to find a doctor that would help. I was almost crying when I was talking to him. He sounded incredibly nice, but I had a hard time trusting doctors since this had started. He asked me a lot of questions, about all kinds of things, whether I had been called double jointed as a child. Some of his questions made sense, others seemed a little irrelevant. At the end he said he wanted to see us at his office in Boston. By the time we hung up, I was crying. This doctor, with so many amazing accomplishments, might actually be able to give me answers about what was wrong with my baby. He might be able to help him get better.
Quincy and I flew out of Little Rock on July 4th. I can’t describe the peace I felt as I watched Little Rock disappear below us. We were far away from the people who wouldn’t help Quincy, we were out of reach of the people who wanted to take him and kill me. It had been almost 100 degrees when we left Clinton National Airport that morning. As we were approaching Logan International Airport, they announced that it was in the 80s in Boston. I almost started cheering. Everyone else on the plane was groaning about it, so I kept quiet. Quincy slept in my lap for most of the trip, something about taking off seemed to put him to sleep. Other passengers commented on how calm he was and that they hadn’t noticed that there was a baby nearby.
Unfortunately, because of his size they assumed he was several months younger than he was. Quincy was almost seven months old, but most people thought he was about two or three months old. It didn’t help that he had missed most of milestones such as sitting up and even holding his own head up. I watched the fireworks from our hotel window that night, while Quincy slept in his crib.
The next morning was our meeting with Dr. Holick. I was awake before dawn and making sure I had everything ready. I pushed Quincy in his stroller down to Boston University to meet with him. When he came down with his assistant, another doctor, and some students, one of the first things he noticed was that Quincy had visible blood vessels around his temples. When he pointed this out to the people with him, Quincy looked up at him and he noticed that he had very blue sclera. Quincy will be three in December. He still has sclera as blue as when Dr. Holick saw him. Amongst Dr. Holick’s other observations during that meeting, he thought that Quincy might have gastroparesis instead of GERD. I made a note of that to try to get it checked back in Arkansas. Dr. Holick thoroughly looked at our medical background. He thoroughly examined both me and Quincy, noting everything from us both having high arched palettes to me having hypermobility in the joints of my fingers closest to my fingernails. While he didn’t give us a diagnosis, he did help point out things I could have checked once I got back to Arkansas to confirm his suspicion that I have Ehler’s Danlos and may have passed it onto my son.
Once we were back in Arkansas, I talked to my WIC dietitian about my trip and Quincy’s continuing vomiting. Once she saw that Quincy had gained one ounce in a month, she called Dr. Beene’s office and demanded that he be scheduled with GI immediately. We finally had that GI appointment by the next morning. Quincy had his appointment with GI the next week. The first thing the doctor said when he came in was, “why haven’t I seen you before?” He scheduled Quincy for an upper GI study a few days later.
Quincy wasn’t allowed to eat for a few hours before the study. I got him up early so that he could have one last bottle of milk and a jar of smashed peas before his fast. During the study Quincy’s fractures that were last seen in April were still visible. They hadn’t healed in four months. After he was given the solution to drink, we waited a long time for it to leave his stomach. In fact, the jar of peas that I had fed him early that morning were still in the fundus region and stayed there throughout the study. The final determination was that Quincy had
markedly delayed emptying of the stomach and no signs of reflux. Dr. Holick’s suspicion was correct. Quincy has gastroparesis. We were able to get a new feeding plan for him. I needed to add a scoop of formula to every bottle of pumped breast milk I gave him. This increased the nutrients he was getting without overwhelming his already slow digestive system with more volume, as the rice cereal had done. Quincy still throws up, he probably will continue to throw up, but thanks to Dr. Holick, he started growing again. After months, he was back on the growth chart.
At his next appointment he was at the 25th percentile, he sat up on his own for the first time, he pulled up and started walking while holding onto something, he was no longer considered a failure to thrive.
Dr. Holick had already performed a miracle, in my opinion, when he turned Quincy’s health around. I have no doubt that Dr. Holick saved Quincy’s life. If we hadn’t seen Dr. Holick, if he hadn’t listened to me when we needed him the most, I believe my son would have eventually, slowly starved to death.
Zachary couldn’t see Quincy at all while he was waiting for trial. It put a huge weight on him. In all the years I had known Zachary I had rarely seen him without a smile. He was the happiest, most laid back person I have ever known. He wanted to be Quincy’s dad, but couldn’t. It was heartbreaking.
Zachary’s public defender, Kent Krause talked to Dr. Holick and loved his expertise, his knowledge, and that his advice had led Quincy’s recovery. Mr. Krause told us that Zachary was one of the few cases of true innocence that he had handled and lamented that the prosecutor couldn’t see that. Usually the public defender’s office had clients that were actually guilty and their job was to make sure that the process was fair.
At the trial, almost a year after Zachary was arrested, I had to testify for the prosecution. The prosecutor asked if Dr. Holick had diagnosed Quincy over the phone. I said that no, he hadn’t diagnosed him at all. The phone call with Dr. Holick was only to determine if there was enough reason to see him in Boston. Dr. Holick only takes these cases for further study if they are most likely Ehlers-Danlos that has been misdiagnosed as child abuse. I don’t think he would take a case that he believes to be actual child abuse. I told her that if she was looking for a doctor that was making diagnoses without seeing the patient that it was Karen Farst she was looking for, not Michael Holick. At the end of my testimony the prosecutor asked me if I felt that Arkansas
Children’s Hospital had done well at caring for my son. It was such an unexpected question that I laughed. No, they would have let him starve to death and then tried his father for murder.
I wasn’t allowed to stay in the courtroom for the rest of the trial. As I left, I was greeted by Dr. Farst who had a huge smile on her face. She was testifying next. When she left, that smile was gone. My understanding is that she had testified beyond her expertise and was close to having her testimony struck. In the hall, the prosecution’s second doctor was rehearsing his testimony. It was Dr. Glasier, the doctor who had chased me out of MRI after I had already been cleared to be there with Quincy. It was clear he didn’t recognize me. When Dr. Farst came out of the courtroom, he pointed to something on the piece of paper he was rehearsing from. Dr. Farst loudly said that she couldn’t help him and quickly left.
Dr. Holick was scheduled to testify on the second day by Skype. While I had to stay in the hall outside, I know he testified for about four hours, longer than anyone else by far. I don’t understand Mr. Krause’s decision to only have Dr. Holick testify for the defense. We had four other doctors who had independently come to the same conclusion. He was the first doctor to see Quincy, and it was his suggestion to look into gastroparesis that had saved Quincy’s life. His work follows a logical and scientifically based path, but I don’t believe it would have confused the jury to see that he wasn’t the only doctor who believed that Quincy hadn’t been abused.
The prosecution originally tried this case as a class y felony and they were seeking a life sentence. After the trial, the jury found Zachary not guilty on all felony charges, but were hung on a misdemeanor charge. I believe if we had called another doctor to show that Arkansas Children’s Hospital had ignored symptoms that should have been clear as day and rushed to a premature diagnosis without seeing and evaluating him, then failed to follow up when Quincy’s condition didn’t improve, that this would have been completely not guilty.
After a year without being able to see his son, I can only describe Zachary as broken. He didn’t smile anymore. Once Quincy had gained some weight that it was no longer easy for me to carry both him and the carseat into the house. I started only taking Quincy in. I was allowed to visit Zachary while my mother babysat Quincy for me. The next time I saw him, he was staring at the empty carseat in the backseat. He told me he liked that it was there. It made him feel like a real dad again. I was devastated that he took a plea deal after that, but I understood why. No jail time, the no contact order was lifted and he was able to come home that day.
His career is over, but our family is whole again thanks to Dr. Holick.
My regular physician, Dr. Fendley and my rheumatologist, Dr. Berney both agree that I have Ehlers-Danlos. In September of 2018, Dr. Berney gave me an official clinical diagnosis. Quincy’s condition and particularly his vitamin D levels are being monitored by his new pediatrician, Dr. Lucas who is a fantastic doctor.
False accusations of child abuse shouldn’t happen, and Dr. Holick shouldn’t have to help families like ours. Families shouldn’t be ripped apart for months or even years. Doctors like Karen Farst need to stop, do their due diligence, the evaluations, the medical histories, the basic care that is expected of other doctors. There is no excuse for what happened to my family.
These doctors make overreaching diagnoses that they can’t be sure of. They ignore obvious differential diagnoses even when it is to the detriment of the patient. My son’s diagnosis was more important to them than he was. I wasn’t willing to give up on him and neither was Dr. Holick. Quincy is not a diagnosis; he’s a happy little boy who loves dinosaurs, trains, drawing, and singing in church.
The problem isn’t that Dr. Holick can see things that no one else can; the problem is that child abuse pediatricians refuse to see what is right in front of them. As a parent and as a patient myself, I will always pick the doctor who gets results and can explain how they got there. If Quincy had gotten better after his father was removed, I would have accepted the diagnosis. I wouldn’t have liked it, but it would have been a temporary condition. He would have recovered and not remembered ever having it. Unfortunately, when he’s old enough he will most likely receive an Ehlers-Danlos diagnosis, and it will be with him for the rest of his life. I hate that. He will never completely recover. I can’t imagine any parent wanting to choose this for their child, even when the alternative is a child abuse diagnosis. I don’t want my son to have an incurable condition.
A few days before Quincy’s second birthday, I took him to the grocery store. When we got to the check out, Quincy threw himself to the floor and started screaming for no discernable reason. I smiled, because after months of not knowing if he was going to be okay, if he would grow, if he would even live, Quincy had hit the terrible twos right on time and it was the best feeling to know that he was going to be okay.
The hippocratic oath is “Do no harm.” Dr. Holick lives up to that in every way. It’s doctors like Karen Farst, who ignore well documented symptoms that have been present from a child’s birth and refuse to reevaluate when a patient is still sick, that are doing significant harm.
