A little while back, I shared a video of a news clip about a family that had been accused of abusing their infant daughter. The husband was singled out, charged with abuse, and only allowed to see his daughter a couple hours a week with state supervision. Some of you know that the reason I shared that video is because we have a similar story. Over the last week, several of you who know a little of what has been happening with us have messaged me, encouraging me to complain to the state or go to the press. I really appreciate your messages. It makes me feel good to know that you are angry about the way we’ve been treated. But it also made me decide to truly and completely come out with our story, so that you understand why complaining makes no difference. If enough people know what is happening in good homes, maybe enough of us can stand up and change what is happening.
I need to preface this with something; CPS knows that on occasion a good home gets falsely labeled by them. Police know that sometimes an innocent parent goes to jail. When you ask people how they can justify that, their response is “it’s better that one good parent suffer a tarnished reputation than a child be left in a home where they are abused.” That makes sense. Better safe than sorry, right?
On March 4th of last year, at 4 in the morning, Charlie woke me up. “I think something happened when I was taking Zeph out of his swing.” I rubbed at my eyes and sat up as he held our crying son out to me. “I had a hold of his thigh and heard a pop. I’m worried it dislocated.”
As I took Zeph, he stopped crying. “Seems ok,” I responded. Just to be sure, I took hold of the leg Charlie had indicated and gently moved it. Zeph let out a cry. I looked it over. No swelling, no bruising, just a normal looking leg. His cries almost immediately subsided, so just to be sure, I slowly pushed his leg up.
He cried out again. We looked at each other and practically in unison said it was ER time. Charlie brought me the car seat and we ever so carefully strapped him in, woke up Eliza, threw on some clothes, and climbed in the car. The mother that got in the car that morning with her husband and children never came back.
I know that this will be long. I’m sure not many people will even get halfway through it, but I think it needs to be said anyway. I want to give you all the reasons I’m writing this, justify taking so much of your time, but I think those of you who read this will understand those reasons without me spelling them out for you.
Our first stop that morning was USMD. The doctor palpated Zeph’s leg and told us it was broken. X-rays were done. We were never told how bad the fracture was. He simply said not to worry, that these things happen, and that Zeph would heal just fine. We were told that we needed to transfer to Cook Children’s hospital in Fort Worth for treatment. What we didn’t know was that CPS had already been called.
I was so proud of how calm and collected I was as I rode with my 5 week old son in the back of the ambulance. I had cried when they had me hold him still for the x-rays, but other than that, I was doing good. The doctor had said it wasn’t a big deal, just a simple break. He’d be fine. It was ok.
Zeph and I got to the hospital before Charlie, who had taken Eliza home to grab baby supplies. As soon as we were in the building, an ER doctor took my arm and directed me down the hall away from my baby.
“How did this happen, exactly?” she asked. I told her what Charlie had told me, that while getting an angry and squirming baby out of his swing, that he had heard a pop. “Did they tell you anything about the fracture at the other hospital?”
“They said it was broken but that it wasn’t bad or anything.” The look on her face was dark. My stomach sank. “But I suddenly have the horrible feeling that they didn’t tell me everything.”
“Your son has a spiral fracture of the femur,” she explained as we approached a room with an x-ray display. On the display was a small baby’s leg. The bone was snapped clean in two.
My brain stopped and I couldn’t breathe. “The halves aren’t even touching,” I whispered.
“The only medical way that this could possibly have happened,” she answered, pointing to the gaping space between the two pieces, “was if your husband intended to break your son’s leg. The only way this break could have occurred is if he grabbed your son’s leg like this and twisted.” She held her hands up in fists, then twisted them roughly as if she was wringing out a dish rag. “There’s no other way this could have happened.”
I’m sure I said all the usual, like “my husband would never do that,” and “he’s a good father, there must be some explanation,” or whatever, but honestly, I don’t remember what I said. I just remember knowing, in that moment, that they were going to try and take my children from me. As I looked at that x-ray, I burst into tears.
By the time I was escorted to Zeph’s room, Charlie was already there waiting, laden with bottles and snacks, and an Eliza who was now dressed with freshly combed hair. He looked like a good, loving dad.
He took one look at my face and froze. “What’s wrong?” he asked.
“His leg is broken clean in two,” I answered, fighting not to start crying again. “They say you had to have done it on purpose, that there’s no other medical way it could happen.” It didn’t occur to me in that moment to reassure him that I knew he didn’t do it, to tell him that I thought they were wrong. He was my husband. If I thought him capable of that even for a second, well, then he wouldn’t be my husband.
I took the seat next to him. He said nothing for some time. I imagine now that he was probably wondering whether or not I believed them. Zeph was on the bed in a harness that kept him from being able to kick his legs, blankets rolled up on either side of him.
The next seven or so hours were spent being questioned by doctors, CPS, and law enforcement. Dr. Sophia Grant was the child abuse specialist that questioned us. I told her Charlie was a good dad, and didn’t even have a temper to lose. I also told her that I was concerned there was a bone disorder in his family. Throughout the course of his life, Charlie has suffered many fractures, none of which were done doing something that should have broken a bone.
“I see. So, Charlie, when you fractured these bones, were you doing something or was it spontaneous?”
“Well,” he answered slowly, “I was doing something. I broke my foot when I was going down stairs-” That’s as far as he got. She cut him off, then turned to me to continue her questioning. Too scared to argue or insist, Charlie and I let it drop.
I don’t remember when it was, but at some point during the day, a nurse came in to tell us the results of all the testing they had done on Zeph to check for “more abuse.” They had done blood work and a urinalysis to check for internal bleeding and damage, a cat scan to check for shaken baby syndrome, and full body x-rays to check for other fractures.
“Everything came back clean,” she retorted, looking disappointed at the results, “but your children can’t speak for themselves, so we need to be their voice. This doesn’t mean they haven’t been abused.” Then her face lit up with a sudden afterthought. “They did find a cyst in his brain, but you’ll make an appointment with a neurosurgeon and he’ll discuss that with you. It’s not an emergency.”
As the hours went on, I kept trying to ask about Zeph’s leg. Was he going to have a cast? When were they going to treat it? Every time I asked, the nurse would respond with “the doctors are still deciding.”
Around five that evening, the CPS caseworker, Monica, informed us that she was putting a safety plan in place. “Until we decide what happened to Zeph,” she said, “I want you both to be supervised at all times when you’re with your children. Is there someone you could stay with or is there someone who could stay with you?”
Charlie and I looked at each other. For the hundredth time that day, I felt like I was going to cry. That was such a burden to ask someone to undertake. Who did we even know that was home all day? Charlie pulled out his phone and, with furrowed brows, began skimming through his contacts.
“What if we can’t find someone?” I asked, terrified that I already knew the answer.
“Then I’m going to have to take your kids with me.”
My husband is an angel. While I sat there, holding Eliza and crying, he made phone calls. An incredible, sweet, stay at home mom from our church was more than happy to let us stay with her and be our supervisor. But there was one more condition put on the table.
“You can sleep at their home” Monica said to me, but then she turned to Charlie, “but I would like you to find someplace else to reside. You can visit your wife and children any time during the day, but once it’s bedtime, I want you elsewhere.” She pulled out a paper for us to sign, saying we agreed to the conditions, and our amazing supervisor came to pick us up. When she arrived, Monica started saying her goodbyes.
“You are free to go now. I’ll come by in the next day or two to inspect the home you’ll be staying in and to discuss the case with you more.” She started to gather her things.
“We still haven’t been talked to about Zeph’s leg yet,” I interrupted. “I still haven’t been told if they’re going to cast it or how to care for him at home.”
Monica looked surprised. “Oh! Well, let me find out what’s going on.” She slipped out.
A few minutes later, in came a man who looked to be maybe 30. He inspected the harness that Zeph had been put in, then handed me a pamphlet. “The harness is adjusted correctly,” he quipped, making minimal eye contact. “I’ve made marks so you know where to put the straps back if you undo them.”
I was still a little confused. “What are the reasons I would undo them?” I asked.
“I don’t know,” he blustered, looking agitated, “just if you do.”
Remaining undaunted, I started asking questions about care. The harness kept Zeph from kicking his leg, nothing more. It was still very mobile and completely exposed to being bumped, moved, and the like. I couldn’t even imagine how I was supposed to hold him without putting pressure on his thigh. With each question, the wound tech would answer, “read the pamphlet,” instead of giving me an answer. So I gave it a quick once over. It was about hip dysplasia. It gave me absolutely no instructions on how to keep from accidentally rebreaking his leg. For crying out loud, it wasn’t even set or splinted.
After continuous rejection from him, I tried one last question. Apparently it was one question too many. “I’m here to make sure the harness is on right and to hand you the pamphlet,” he snapped. “I’m not here to answer your questions.” With that, he got up and left.
The first few days were a blur. My mom and sister started making their way by car from Nebraska down to Texas to be our supervisors for a couple weeks, and we had our first meeting with Monica. She sat us down, told us that she felt we weren’t capable of handling two children so young, and that when the case was over, their intention was to remove the children from our home. She said we shouldn’t worry though, because they would give us a chance to try and get them back.
My heart broke. There are no words to describe what it’s like to have someone tell you that they are going to walk into your home and take your babies, and that you are going to have to let them, that you are going to have to watch them drive away, that you’ll get an hour of visitation each week. And if you’re good and take all your parenting classes, you might get to have them back, but no promises. Of all the things that have happened to me in my life, there is nothing that haunts me more than hearing her say those words. I still have nightmares of police coming into my home and wrestling my children out of my arms. That day, the state taking my children from me became my greatest fear.
CPS was not our only concern. You know good cop/bad cop from the Lego Movie? He’s real, and his name is Officer Grant Gildon. He was in charge of the criminal investigation. He came to our home to do an inspection and to further question Charlie. He looked around, took pictures, all the time being super pleasant and friendly. As he headed toward the door to leave, he turned to Charlie.
“Here’s the thing,” he said, sounding like he was about to tell Charlie some awesome life hack, “lot’s of times what happens is there’s an accident. Maybe you’re holding the baby and trip, or you get clumsy and drop the baby, you know, something like that. When that happens, people are too scared to say they messed up.” He gave a shrug of his shoulders. “But accidents happen. We all know that. So, look, if you just tell me what really happened, you’re not going to get in trouble. We don’t go after people for accidents.”
Charlie, in all his to the point glory, simply replied, “There was no accident. What I told you happened is exactly what happened.”
Officer Gildon’s face went red. “I understand if you’re scared to tell me the truth,” he bit out, “but if you don’t tell me what really happened, someone’s going to jail.” He turned and pointed a finger at me. “And don’t you think that you’re off the hook. You might have broke it, then realizing what you did, put your son back in his swing for your husband to find.”
I think that’s the first time I started actually feeling pissed. “I would love to tell you what you want to hear, Officer,” I said, putting my hands over my heart, “but we’re honest people and we don’t lie, as much as we’d love to right now. I’d love to tell you that there was an accident, that Charlie tripped, or we didn’t strap Zeph in properly, but that’s not what happened. I’m sorry. We’ve told you what happened and we can’t and won’t tell you different.”
The rest of that first month was a whirlwind. It consisted of attorney visits, way too many doctor and surgeon appointments, an MRI, massive amounts of research on infants and fractures, and many lonely nights. Maybe I’m needy, but not getting to cuddle up against my husband at night is hard enough without the fear of losing my family hanging over me like a scythe. We actually would webcam at night. No, not the kinky kind; we would set up our phones so we could see and hear each other all night so we wouldn’t feel alone. There were times I couldn’t fall asleep, my chest aching and my throat tight with tears. Hearing Charlie’s soft snoring was the only thing that got me through each night.
Monica, our attorney, and the family based services worker who would be taking over our case came around week 5 to discuss the closing of the CPS investigation. Monica told us that they were planning on a finding of “reason to believe abuse” against Charlie. As for me, she couldn’t promise because she had to ok it with her supervisor, but she said that right then the intent was that I would receive a letter stating abuse by me had been ruled out. A couple weeks later, Charlie received his letter. Sure enough, a finding of “reason to believe was marked.” Even knowing that they were going to do it, looking at the letter made me angry.
But my letter never came.
I called our attorney to let her know of the oversight, and she in turn contacted Monica. Turns out, Monica lied when she said both Charlie and I were being investigated for abuse. Since Charlie had admitted it was on his watch, I was never a subject of investigation. Our attorney was livid. For more than a month, I couldn’t even get up at night to feed Zeph without waking up the supervisor so they could watch me, something that is not necessary for someone not being investigated for abuse, and actually was the reason I stopped being able to nurse. I’m an extremely private person, and no matter how badly I wanted to give Zeph what was best for him, having someone sit and watch me literally killed my body’s ability to produce. Our attorney told me to call the ombudsman for CPS, and to let them know that I had been mislead and coerced into signing safety plans that I should not have had to follow. I did so.
The phone call was aggravating. As I explained our social workers transgressions, the person on the phone would just keep repeating, “I’m sure she had a good reason.” The letter I received from them shortly thereafter to let me know what they found was enraging. It read something along the lines of: “Thank you for your concern. We talked to your social worker and she insisted she didn’t lie to you. CPS knows what they’re doing, so please be cooperative and do what your case worker advises.” When this is finally over, I have every intention of calling them again and giving them a speech that I have recited over and over. Hopefully I can do it without the profanity.
About three months after the event, I got a phone call. The caller ID was Charlie. I love getting calls from Charlie when he’s at work. It’s never a long conversation, and it’s always whispered so as not to be heard by his deskmates, but it’s always good to hear his voice.
But it wasn’t Charlie.
“The police just showed up,” a voice said. “I have his phone and things.” It was one of Charlie’s coworkers. My husband had just been arrested.
I waited by my cell phone for hours, waiting for that “one call” that everyone on TV gets when they’re picked up. When it finally came, I was in for a surprise. It’s not free. It’s collect. And not just collect. You have to have a prepaid account with a specific service. The phone told me I had a collect call from Charlie, but that I needed to set up an account. Frantic, since I knew he was timed, I started setting up the account. A minute in, Charlie tried calling again. I felt time slipping away. Just as I started approaching the end of the setup, it told me I had entered something incorrectly, and the call disconnected. Hot tears rolled down my face as Charlie called yet again. I had to start the set up from the very beginning. By the time I finally had an account and had it prepaid, Charlie stopped calling. I tried calling the number back, even though I knew it was useless. I called over and over, crying like a little girl who just saw her puppy run over.
Charlie was in jail for five days while I tried to arrange bail and attorney fees. In the end, it was because of his selfless and incredibly kind grandparents that he was let out. His grandfather handed me his credit card and let me put an outlandish amount of debt on it with nothing more than my word that we would make payments. Don and Billie, I’m sure you’ll never read this, but you didn’t simply bail Charlie out of jail. You brought a father home. During those days, Eliza would often wander the house, looking for Charlie, calling out “Daddy!” Every time the front door would open, she would come running, thinking that her daddy was home, only to be disappointed.
As we met with now a criminal attorney, we were told it was our homework to find a doctor that could and would say that abuse was not the only explanation. I didn’t think that would be too big of a problem. When I had met with Zeph’s orthosurgeon, Dr. Jason Kennedy, I had asked him about the abuse accusations.
“The doctors at the ER told me that the only way this could have happened was if my husband did it on purpose,” I had explained to him. “Is that correct?”
He didn’t look very comfortable with the conversation, but he obliged me with an answer. “Really, it’s nearly impossible to look at a single break and say it had to be abuse,” he drawled. “There isn’t actually a way to ‘see’ abuse on a radiograph. Of course, the more fractures, the more suspicious we are, but a single fracture really doesn’t necessarily say ‘abuse.’”
Afraid that he was just saying what I wanted to hear so I wouldn’t cause a scene, I reworded my question and asked one last time. “So, let me ask you this way: If you were there, if you actually saw my husband remove Zeph from the swing, heard the pop, and knew that what my husband says is true, would you be worried that there’s a bone disorder of some sort?”
“Absolutely not,” he said, with a dismissive wave of his hand. “Yes, it’s a fluke, and yes, it’s not everyday that babies break bones during normal handling, but if he was fighting against your husband and the right pressure was put on his thigh, it could very easily have happened the way your husband said it did.”
“So you wouldn’t worry about a bone disorder?”
“No. We don’t test for or worry about bone health unless the child keeps breaking things.”
My stomach sank. “If my son breaks another bone,” I responded slowly, “CPS is going to take my children away from me.”
He suddenly looked uncomfortable again. “Yeah…” he murmured, then changed the subject.
Months after that conversation took place, I called his office. After I explained that I was hoping Dr. Kennedy would write up something saying the fracture was not by itself indicative of abuse, I was handed over to a nurse.
“We don’t really do that kind of thing,” she informed me, “but if what you say is true and there were no other fractures or signs of abuse, then typically the doctor will not rule abuse and CPS should be happy and close their case against you.”
“My husband just spent five days in jail,” I retorted, getting tired of everyone being surprised that CPS still had their teeth in us. “There was nothing to show the fracture was abuse, everything came back clean. The ER doctor still says it’s abuse and my husband is being charged.”
There was a long silence on the other end, then “Oh my gosh… Hold on, I’ll go talk to him.”
I waited maybe about five minutes, praying that this would get me what I needed to keep my husband out of jail. When she came back, I could tell by the first word out of her mouth what the answer was. Her voice was dripping with regret and sympathy.
“I discussed it with Dr. Kennedy, and he’s very sorry, but our office just doesn’t get involved in child abuse allegations.” The words were a horrible betrayal. “I’m sorry.”
“Not even just a generic letter?” I choked. “Something that just says single fractures by themselves are not evidence of abuse? Even though it’s what he told me?”
“I’m sorry,” she reiterated, sounding so much like she wished she could give me a different answer. “We just can’t get involved.”
It was not the last phone call I made to a specialist, asking the same question. Over the course of several months, I called office after office. I would tell them our story, and they would be shocked that the doctor had accused my husband of abuse so lightly. After they expressed their horror at our situation, I would then ask them the magic question: Would they be willing to go over his chart, and if they did not think abuse was definite, would they make that statement before a court.
I always got the same response.
“Your situation is horrible,” they would say, “and we agree that a single fracture isn’t enough to diagnose abuse, but unfortunately, our office doesn’t get involved in child abuse allegations. I’m so sorry. We wish you luck.”
I finally called our pediatrician. I had been hoping for someone who specialized in bone health, but I had called every pediatric orthopedic and endocrinology office in a rather large radius, and a family practice doctor was better than none. After a week of supplementing with formula, Zeph’s vitamin D was 23. Our pediatrician, Dr. Cahan, had said that if it was only 23 with supplementing, it would have been much lower prior, when I was just nursing, making for weak bones. So I gave her a call to officially ask her to testify to that when Charlie’s court date came.
Dr. Cahan was out of the office, apparently having surgery, so I left a message for the nurses to pass along my question. I then waited anxiously for her reply. When I got the call back, I had butterflies. This was it. She was my last hope.
I’ve never felt so out of control and angry as when the nurse told me that “Dr. Cahan doesn’t do that kind of thing.” I hung up the phone, calmly set Eliza in her room and closed the door, then turned and unleashed hellish fury on my bedroom door.
“F--k!” I screamed, punching the door much harder than I had intended. I heard wood splinter and it burst open. In that moment, I knew my husband was going to go to jail. Every doctor sympathized with me, every doctor told me this was unfair and wrong, but not a single doctor would stand up for my family.
I cried, and I cried hard. Slumping defeatedly in the chair at my computer, I opened up google hangouts and proceeded to message Charlie. I wanted to call him, but I didn’t want him to hear my hysteria. He had spent the last nine months being there for me, comforting me when he was the one who faced losing his entire family. As I typed I prayed, prayed for anything and everything. This was so wrong. My husband is a good, kind man, and an amazing father, and his life was about to be ruined. And me? I was going to be spending the next 5 or more years of my life trying to raise my children alone, counting down the years, days, and minutes until I could take my best friend home with me again. My children would get to see their father at scheduled times. He wouldn’t be the person who made pancakes on Saturday and took them camping. He would be the person who they saw during visiting hours, wearing orange and watched by guards. There wouldn’t be bedtime stories and family road trips with daddy. There would be a man in prison, accused of hurting his little baby on purpose.
As always, Charlie responded to my message about Dr. Cahan’s refusal with words of comfort, telling me it was ok, to not give up. And how was I not to give up? I asked. There was no one. I had spent months making phone calls. There was no one left to call. He brought up a website that I had mentioned to him in my research of fractures, and told me to try and get in touch with them to see if they knew anyone.
Nervous and refusing to let myself get my hopes up, I pulled up the website for The Vitamin D Council. I felt bad for the person who answered the phone. I was already crying as I gave him the sloppy short version of our story, ending in a tearful plea for any leads or information he could give me.
“It’s going to be fine,” he told me. “It’s ok. We get calls from people like you all the time. I’ll have one of our doctors give you a call, but in the mean time, I can give you some other people to get in contact with.”
He gave me a couple names. The last one was Dr. Michael Holick. “If you want to call him, I would recommend it. Dr. Holick is known as the father of vitamin D. There is literally no one in the world who knows more about it than him.”
First thing on a Monday morning, I called the Boston Medical Center, where Dr. Holick is a practicing endocrinologist and biochemist. They gave me his personal email, telling me he was always more than happy to help “people like me.” I emailed him the details of what my husband said happened, of what the hospital labs said, and what the hospital’s doctors said. He told me he would be happy to discuss my son with me via phone conference. A time and day was arranged.
As we waited for his call, my husband and I waited nervously, huddled together around our kitchen counter. I had done some research on Dr. Holick during the days leading up to that phone call. The best way to word that man’s accomplishments and knowledge would be to say that he’s the equivalent of a geek celebrity, a leading expert worldwide in bone metabolism. If anyone could help us, it would be him.
When the phone rang, I thought we would be going over the entire story again, the one we’d told a hundred times over. To my surprise, however, Dr. Holick was not particularly interested in the actual event of Zeph breaking his leg.
“Are either of you double jointed?” he asked. Charlie and I gave each other baffled looks.
“No,” we answered in unison.
I held my arm out, locking my elbow, even though Dr. Holick couldn’t see it. “I’m definitely not,” I reaffirmed.
“Yeah, I’m not either,” Charlie chimed in, mimicking my outstretched arm.
“Charlie!” I exclaimed, shocked at what I saw, pointing at his arm.
Confused, Charlie gave his arm a look. “What?”
I still can’t believe I had never noticed. Reaching over and pulling his sleeve up so he could see his elbow better, I said, “Charlie, you are definitely double jointed.” His arm made a neatly unnatural v shape at the joint. We started checking him other places; knees, fingers, etc… Charlie was very “double jointed.”
From there, the conversation turned to Charlie’s health history. After a few minutes, I brought up the fractures that Dr. Grant had dismissed. “He’s broken several bones,” I offered, “and they all broke pretty easy. He also developed osteoarthritis at twenty.”
“Oh, really?” If possible, the doctor suddenly sounded more interested. “Here’s the thing,” he said. “What you’re saying sounds like all the classic signs of something called Ehlers-Danlos syndrome. I really want to see all of you in my office.”
But I had to, of course, ask the question any mother would be thinking at that moment. “If you examine him and decide our son does have this disorder, is he going to be ok? I mean, is this something that has a treatment?”
“No, unfortunately, there is treatment for many of the symptoms, but he will have this and struggle with it his whole life. It will however, explain things about him that you might have noticed as odd.”
“Forgive me if this is random and unrelated,” I interjected timidly, “but one big thing I’ve noticed that’s ‘odd’ is that his toenails are constantly cracking, but they don’t break normally. They crack vertically.”
“Yes!” Dr. Holick practically shouted. “Yes, yes, yes! That is a classic symptom of Ehlers-Danlos.”
That day, as I hung up the phone, we had hope.
Two weeks later, leaving Eliza in the care of an AMAZING member of our church, we packaged up our infant son and flew to Boston for an appointment with Dr. Holick. I was so nervous. What if he looked at Zeph and decided he didn’t have Ehlers-Danlos syndrome? What if we had spent money we didn’t have for nothing? What if after all our heartache, my husband still went to jail?
I wish so much I could remember her name, but I just can’t. A very sweet, soft spoken doctor spent a massive amount of time with us before we saw Dr. Holick. The reason? He was teaching her how to diagnose EDS. Histories, physical complaints, the works. Then, when we were pretty sure there was nothing about Charlie or Zeph she didn’t know, in walked Dr. Holick.
He shook my husband’s hand, then mine. Then, without wasting a second, he said, “Did she tell you why his legs are red?”
I looked down at Zeph’s legs. Yes, they were red. They were always red. “Well,” I stammered, “I hope this doesn’t sound racist or ignorant, but he’s got a good dose of Native American in him.” I know I was definitely blushing. “We always thought he was just a little ‘Redskin.’”
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| Those knees ain't normal |
He walked over and pressed his thumb against Zeph’s thigh. When he pulled away, it left a burning white spot that was swallowed up by the red a few seconds later. “That’s inflammation caused by mast cell hypersensitivity. Mast cells don’t work properly in many people with EDS, causing allergy symptoms.” He explained what EDS was, a genetic disorder of the body’s connective tissue that causes hypermobility in joints and wreaks havoc on body systems. “You’re actually very lucky,” he told us. “EDS can cause babies to fracture with routine handling. You’re lucky your son only had one fracture. I’ve seen many babies that have broken up to 22 bones. Before infants start fully calcifying, their bones are made up of mostly connective tissue, leaving those with this Ehlers-Danlos fragile.”
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| I try to bend my thumb like that every time I look at this picture. |
As we talked, he casually pointed out all the diagnostic criteria of EDS that both Charlie and Zeph exhibited. Blue sclera of the eyes, hypermobile joints, a mass of food, skin, and outdoor allergies, and for Zeph, the classic “square head and protruding forehead.” I couldn’t decide if it was good or bad. We now could show a court that there was a good explanation for the fracture, but I was being told that my son would grow up to struggle with bone and joint health, constant allergies, and a plethora of other random health issues, some of which can be debilitating.
We flew home exhausted and feeling a deep sense of relief that was practically physical. The first thing I did when back at my computer was look up ehlers-danlos syndrome and infant fractures. What I found was both hopeful and disheartening.
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| The "protruding" forehead and square head. |
The good news was that there were many articles about parents who had been criminally charged with abuse, only to have the infant diagnosed with EDS. With the diagnosis, the charges were almost always dropped without going to trial. The odds of Charlie going to prison had just drastically gone down.
The bad news was that there were so many articles about parents being accused of abuse, being arrested, not being allowed to see their children except for short supervised visits, only for the children to later be diagnosed with EDS.
I thought back to our experience in the hospital. I had brought up bone disorders. Twice. Charlie had tried to explain his poor bone health and was stopped. We were treated cruelly and our concerns that something might be seriously wrong with our son were blatantly ignored. Why? It took Dr. Holick five minutes to diagnose both my husband and son. Why couldn’t Dr. Grant, who is supposedly trained to distinguish between what is abuse
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| Erythema. Now that he takes Zyrtec everyday, his legs are no longer red. |
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| Notice the bluish hue to the whites of his eyes? |
I called attorneys. Surely, something the hospital did was malpractice. Hell, they WANTED us to be guilty, refusing to consider disorders and family history, and most importantly, refusing to allow me to ask questions about how to care for my son at home. Each attorney said the same thing. What they did was atrocious, vindictive, and malpractice. But they couldn’t do anything about it. It’s pretty much impossible to sue a hospital when an abuse case is involved. The state doesn’t want to “punish” them for reporting abuse. One attorney told me that it was a horrible, broken system. “All you can do,” he said, “is pick up the pieces of your life and try to move on. You got caught in something terrible that isn’t your problem, and now you’re paying their price. Be grateful you still have your kids and let it go.”
Let it go? My husband is still facing criminal charges. As of now, they have not been dropped. I get multiple calls a day from Cook Children’s Hospital, wanting me to pay off the 8,000 dollars they racked up doing tests on Zeph to look for abuse. We’ll be paying back Charlie’s grandparents for a very long time, and the criminal charges sparked a custody battle with Charlie’s ex that has financially only begun. Really? Let it go?
I wrote the president of the hospital a very “firm” letter about our treatment, and I’m in the process of filing complaints with various agencies, but I expect I will get the same response from them as I have from everyone else: Nobody gets involved in CPS cases.
I wrote several news stations. Only one got in contact with me. The reason she didn’t take the story? It’s happened so often that it’s not a new story anymore.
I read an article not that long ago where someone said that cracking down on possible abuse cases was a must for protecting children. When asked about the innocent parents that get falsely accused of abuse, she said that it was worth occasionally hurting an innocent person’s reputation for the sake of protecting more children. I want you to understand something very, very important.
When a person is falsely accused of abuse, the last thing they are worried about is their sullied reputation. When you have someone look at you and tell you that you’re going to lose your children, the last thing on God’s earth that you are worried about is your reputation. Sure, it sucks to have people think you beat your kid, but if you think that’s what a person is worried about when CPS and police make accusations against you, you obviously don’t know the love of a parent.
Yes, I want to do something about what happened to us. Yes, I want to complain, scream, make so much noise that no one could possibly ignore me. I want the hospital to be held responsible for everything we went through, for trying to destroy my family, for giving my husband a criminal record. The problem is that the people who matter aren’t listening. There is no diagnostic requirements for hospitals before they “diagnose” an injury as abuse. There is no law saying they need to check for poor bone health or genetic disorders. And CPS? For them to rule “reason to believe abuse” against you, all they have to be able to say is that there is a reasonable chance it could have been abuse.
Yes, I’m lucky I still have my children. Not lucky in the won-the-lottery kind of way, more of in the I-was-hit-by-a-drunk-driver-and-lost-the-use-of-my-legs-but-I’m-still-alive kind of way.
If you read this far, thank you, really. I’m a private person, and this kind of thing is personal, though the part I hate the most is admitting how much I’ve cried in the last ten months. This is a system that needs to change, but those of us who go through something like this are often too ashamed or afraid to say anything. Charlie and I were not shy, and as we told people what was happening to us, I was amazed at the people who had stories similar to ours. We came across them everywhere, from our church congregation to the manager of a music store we once browsed. If you are one of those people, be brave. I want to say something like “Let us gather and storm the castle!!” but for now, I’m going to simply say don’t be ashamed. Tell people. No one can help change things if they don’t know it needs changing.
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