Imagine going to the doctor and being diagnosed with lung cancer. Imagine the medical professional team documenting in your chart that you were a chain smoker and attributing your lung cancer to this devastating habit. The problem with this is that you've never smoked a single cigarette in your entire life. Now, this might be absurd to think about happening because surely your doctor would know this about you as part of making a diagnosis includes gathering a thorough health history, including social history like drinking alcohol, smoking and using drugs. Surely your doctor would not make this assumption about you- that your newly diagnosed lung cancer was caused by smoking cigarettes. You must have been exposed to frequent second-hand smoke. Actually, no, you weren't; you detest cigarette smoke. So, what caused your lung cancer?
It could be genetic-maybe someone in your family passed along a gene that caused you to be more susceptible to cancer or maybe it was your diet or maybe you were exposed to other harmful chemicals as a member of the military (scratch that- you were never in the military). Maybe there were harmful chemicals in your drinking water, something in the air at work that has yet to be discovered...who knows, but it definitely was not from smoking cigarettes, because that never happened. These are the types of questions in your inner monologue as you try to make sense of your new diagnosis. It's crazy to think that a medical professional would assume that you engaged in harmful activities- being a heavy smoker in this case- just because the most common cause of a diagnosis is that said activity. Even more aggravating would be that after you brought this false assumption to the attention of your doctor that they ignore it and keep your supposed chain-smoking habit documented in your health history as a contributing cause of your lung cancer- like you caused it. You have cancer because you are at fault. Would this upset you?
Considered how you would respond if you were in my shoes in this next and very true scenario. The babies that you prayed so long and hard for, that you literally spent thousands of dollars trying to conceive through in vitro fertilization, are born over four weeks early due to premature rupture of membranes. This happened in 2010 when our twin daughters were born. After a short stay in the NICU for one of our girls, we came home together when they were one week old. We followed up with our pediatrician after a few days of being home to see how their jaundice levels were doing and then again at 2 weeks old for their second newborn screen. We had noticed that our twin daughters were fussier than their older sister and brought this to the attention of our pediatrician, unsure if this was a premature baby thing, different personalities issue or if something was wrong. Discussions about colic were had as well as acid reflux. We were given some things to look for regarding reflux. Overall, they seem like perfectly healthy newborn babies.
Over the next week or two, the fussiness and spitting up and arching of their backs worsened, and we visited the pediatrician again with concerns over what appeared to be their discomfort with these symptoms. The pediatrician diagnosed them with acid reflux and started them on a medication to help relieve their symptoms. All that evening and into the morning, one of our twins was very fussy and hard to settle down. It was well into the next morning when my husband was changing her diaper that he noticed one of her legs was drawn up to her chest and she was very upset, as if in pain, in response to it being touched. He tried to convey this information to me, but I was so exhausted from being up all night with her that I didn't quite grasp what he was telling me. It wasn't until I got up with her after the next feeding and was changing her diaper that I noticed the same thing with her leg. She screamed when I tried to move her leg to put on the new diaper. I told my husband and he reiterated that the same thing happened that morning. We then called our pediatrician's office; the same one we were literally just at the day before and told them about her leg and how we were concerned. They asked us to come in as soon as possible.
Thankfully my parents had come over already to help us out for the weekend and they stayed home with our other two daughters, our almost 3-year-old and the other twin. After being examined by our regular pediatrician, she was concerned as well about our baby's leg and sent us to a local children's hospital for x-rays. They were expecting us and got us right back. After a couple of x-rays, it was determined that there might be a fracture around one of her ankles- something that looked like a blurry edge. The ER Doctor said “It’s like chasing a red herring. It may and may not be there." They did some more testing (blood work and a catheterized urinalysis on our 4-week-old baby) to rule out other causes of her drawing her leg up like it was. We were later informed by the social worker that they were contacting CPS because of the possibility of fractures in our infant. As medical professionals ourselves (I'm a labor and delivery registered nurse and my husband is a firefighter/paramedic) we understood being a mandated reporter and figured they were just following protocol.
We were later transferred to the main campus of the children's hospital in another city via ambulance. In my mind I'm thinking that they must have a better orthopedic program there. Wrong. This hospital was where their child abuse team was located. As soon as we rolled through the ambulance bay, we were treated as "those parents"- you know, the kind that abuse their kids. It was a flurry of activity- residents and nurses and techs in and out of our ER room. They drew more blood from our newborn baby and told us we had to bring in our other children to be examined.
So, being as cooperative as possible, my husband drove home to wake up our children from bed, gathered clothes, breast milk from the freezer, diapers, toiletries, etc. and headed back to hospital with my parents and other daughters. Then, they took the twins back to radiology and did a full skeletal survey (23 x-rays) and a CT scan of their heads. They drew labs on our other twin daughter and verbally and physically assessed our oldest daughter. We were interrogated by CPS personnel and questioned by many medical staff. It was concluded by the next morning that both twins had multiple fractures on the same leg in the same locations around their knees and ankles. The child abuse "expert" and his team of fellows rounded on our 1st twin daughter (the one exhibiting pain symptoms in her leg) whom had been admitted to the hospital. I had been racking my brain, as had my husband and parents, as to what could have caused these fractures. There was no bruising, no swelling, and no accidents- just fussiness presumably from acid reflux. I asked the child abuse pediatrician in charge, “What about vitamin D and calcium? Have their levels been checked? What about brittle bone disease? Could they have that? How do we check?" He ordered a heel stick sample of blood to be collected to test the calcium level on our twin that was admitted and "it came back normal, so the vitamin D level is not warranted" is what we were told. We were also told that we didn't have a family history of brittle bone disease and there was nothing suggestive of it on the x-rays and were informed that testing for brittle bone disease was expensive. The conclusion from this child abuse "expert" was that "in the absence of a medical explanation for these fractures that these injuries were consistent with non-accidental trauma caused from a twisting, pulling and yanking mechanism like holding the babies upside down from their ankles and shaking them". In other words, it appeared that our babies were victims of child abuse and as their primary caregivers, we were the suspects.
We then had to sit down again with our assigned CPS caseworker to come up with a safety plan, because we were not going to be allowed with our children unsupervised. It was decided that my parents, whom lived an hour away, were going to move into our house and my husband and I were going to move out essentially. We could be with our daughters, supervised, during the day but could not spend the night. I was breastfeeding and still recovering from my C-section. My due date happened to be the day we took our baby to our doctor out of concern for her. We had just had their newborn pictures done. How was all this happening? Surely, they were going to realize this was just one big mistake and all of this would be corrected. We would figure out what was wrong with our babies. We went from being concerned, to shocked, to devastated by not only their fractures but then the unfolding of this nightmare of being falsely accused of child abuse. We did not fully understand the gravity of the situation at the time.
I truly believed that it would blow over after a couple of days, but for sure by the time we had our next appointment at the child abuse clinic 10 days later. Wrong. Our family was separated for 5 months- 5 long, agonizing months. This is time we will never get back. Even though we were physically together every day during the day, we were not able to be truly present. I spent my days hooked up to a breast pump and behind a computer, ferociously researching. We went to doctor appointments, supervised of course- just like every single second of the day, and all the other "normal" stuff like dropping off and picking up our older daughter from preschool, going to the grocery store, church and any other errands. We did not hide what we were going through because we knew that we would need all the prayers, love and support of all our friends, family and church family.
Church and work friends signed up to help with the girls. Some even spent the night to help my dad whom was taking care of newborn twins and a three-year-old by himself every night while my mom was working. I wasn't allowed to return to work after my maternity leave due to the child abuse allegations because I'm a nurse and work with babies. I was on an unpaid leave of absence with the very real possibility of losing my job and my nursing license. Legal fees in the tens of thousands of dollars and medical expenses piled on top of our normal bills and completely undid any progress we were making on getting out of debt.
We were nothing but compliant in following all the rules that were in place by CPS. We took one day at a time and pleaded with God to make the truth be revealed. Our pediatrician worked with us to help us figure out what was wrong with our girls because we all knew it was not child abuse. With child abuse accusations, it’s not innocent until proven guilty. It's you are guilty, and the burden lies on you to prove your own innocence, which in our case meant figuring out why they had fractures. After the refusal of a few doctors to get involved in our case because "child abuse" was on our chart, we were able to get an expedited appointment with a local geneticist. This geneticist was recommended to us from the OI Foundation (Osteogenesis Imperfecta - brittle bone disease organization) and was recognized by our pediatrician as being the "Grandfather of Genetics". By this time, we had gathered every single piece of medical records we could get and had organized and burned them onto DVDs and sent him a copy to review before our appointment. When we went to our appointment, after having had reviewed our family history and looking through the x-ray reports and blood tests and all the records, he performed a physical assessment of the twins. It was quite evident to him and quickly so, that the girls had a connective tissue disorder. They were nearly 5 months old at the time. He narrowed it down to three possibilities: Cutis Laxa, Osteogenesis Imperfecta or Ehlers-Danlos Syndrome. They all share some similar features and some of their symptoms included: thin translucent skin, blue sclera (white part of the eye), hypermobile/flexible joints, loose and soft skin, delayed closure of the fontanelles, frontal bossing of the forehead and demineralization of the bones.
We were relieved and sad at the same time when we got the diagnosis. It's a terrible place to be- trying to figure out what's wrong with your kids only to discover that something is wrong with your kids. We were relieved to have answers but heart-broken that they had a medical condition that would affect them for the rest of their lives. To our great surprise and overwhelming sense of gratitude, our new geneticist agreed to testify at our next hearing which was only a week away. At that hearing, our pediatrician and our geneticist testified to the fact that our daughters' fractures were not a result of child abuse but rather caused by vitamin D deficiency rickets and a connective tissue disorder. Our judge allowed our geneticist to demonstrate some of his findings before the court to explain his diagnosis. Nearly two months later, at what proved to be our final hearing, our pediatrician testified again and presented new evidence: there was another fracture (also asymptomatic like the others) in our 2nd twin which was discovered in a follow up series of X-rays to assess how their bones were healing. This new information further evidenced that our girls had a medical explanation for their fractures and that it was not child abuse.
The judge ordered our children returned home to us and CPS out of our lives. When the twins were 18 months old, the geneticist reevaluated them and concluded that they have Ehlers-Danlos Syndrome. This was a clinical diagnosis at the time and has since been confirmed with genetic testing, which shows that they have a new variant of EDS called Myopathic EDS caused by a defect in COL12A1.
You don't ever want to be in our shoes. Not ever. But guess what, well over 300 other families, that we know of so far, can tell you about their very similar nightmare. Our stories may vary slightly, but the essence of what went down is eerily similar. I connected with another such mom nearly three years after our case. Bria Huber told me her story and without knowing mine, it was as if she was telling me my own. There were many things in common, including the same hospital and same accusing team of doctors. Her situation was a little different in that her husband was arrested and had just been indicted. At this point, we already had our girls court-ordered back home with us and a firm medical diagnosis in place which fully explained their fractures. I was well-versed in EDS and knew what symptoms to look for, so I simply began asking her questions to which she confirmed the answer to be yes, pretty much every time. I told her that I was 99% sure she had EDS. We just cried together over the phone. For the first time for the both of us, we had connected with another mom whom could understand all the terrible feelings and fears of this experience of being falsely accused of child abuse. We both recognized quickly that we shared the same mission: to share our stories, to bring about something good from this awful experience, to glorify God and share the good things that He was doing in our lives out of this tragedy.
Bria later went on to be evaluated by a rheumatologist and a geneticist and was diagnosed with hypermobile EDS. Getting her daughter to be seen was a bigger challenge. We both had joined an online support group for EDS and got connected with another mom, Christine Jackson from Boston. Christine was going through the same situation of being falsely accused of child abuse because of fractures in her boy/girl twin infants. They had already been evaluated and diagnosed with EDS and rickets and yet they were still fighting legal battles and her husband was facing criminal charges. Christine told Bria about the doctor that had seen her twins. This doctor was Dr. Michael Holick in Boston. The three of us moms decided to connect at the EDS National Conference in Rhode Island that year and Bria was able to get an appointment with Dr. Holick so that her daughter could be evaluated. Her daughter was also diagnosed with hypermobile EDS and vitamin D deficiency rickets. A few months later, Bria's husband Andrew had his charges dropped and their family was reunited after almost a year of separation. Christine's family was reunited after 3 months but the criminal case resumed and eventually ended in a settlement.
The three of us united and started a Facebook Page called "Fractured Families" to reach out to other families that were being falsely accused. We wanted to offer support and raise awareness about conditions that could be mistaken for child abuse-- specifically vitamin D deficiency rickets and Ehlers-Danlos Syndrome. In dealing with people asking for support, we have always been concerned that some people actually do abuse their children. This is a very heart-breaking reality in our world and the last thing we want to do is create an opportunity for real abusers to get off the hook under the guise of having a medical condition. It's the force that drives child abuse pediatricians to "err on the side of caution" and protect children at all costs...including falsely accusing people of abuse. It's a tough road to walk- a hard balance to maintain and it's a terribly hard job.
The problem that we've experienced is that some child abuse "experts" see everything through the lens of child abuse and can't or won't see anything else. Take our case for example. Even after a definitive diagnosis and explanation for our girls' fractures, our accusing physician proceeded to use our case, without our permission, at a Crimes Against Children national conference. He presented the case as one resulting from child abuse. Not how it was inaccurately diagnosed as child abuse, but rather, he painted the picture for the audience as though we were guilty and got away with it.
Unfortunately, as we have come to discover, many people in this line of medicine cannot or will not see beyond child abuse as a diagnosis in cases like ours. The text books teach that certain types of fractures (like our blurry looking end of the bones) are diagnostic of abuse. The problem is that this belief is based off bad science. Part of what makes a research study valid and accurate is the use of a control group. You can't have a control group because it would be harmful and unethical to inflict purposeful injuries on a child to study what it looks like radiographically. But this bad science is the basis of these beliefs that keep getting taught in colleges all over the world.
In this article, Dr. Holick is being referred to as "The Child Abuse Contrarian". His willingness to see beyond the bad science and do his own research and gathering of data should make him more credible. Instead, he has ruffled the feathers of too many of the wrong people within the child abuse community and even within the EDS community and now they are out to retaliate against him. Dr. Holick does not need us to defend him. He is perfectly capable of doing that himself, should he choose to spend his precious time doing so. It makes me angry, as it does so many of the families that have been helped by Dr. Holick, that he is now the one being falsely accused. His work is not popular but popularity doesn't equate to truth. Hardly anyone who is credited with a breakthrough or cutting-edge idea came about such without opposing views.
My family was not evaluated by Dr. Holick. We had no clue whom he was when our case was going on. How is it that my children have the same symptoms, same types of injuries and same misdiagnosis as hundreds of other families? And we, using different doctors, have the same medical explanation now for these injuries? It may seem to others that something unethical is going on here because this one doctor seems to be involved in a number of these types of cases, but there's not. The real issue is why aren't other doctors waking up to the reality that vitamin D deficiency rickets is real and rampant? Ehlers-Danlos Syndrome is not as rare as once presumed. Separately and certainly put together, these conditions can cause fractures and other injuries that mimic what has been considered to be injuries consistent with abuse.
Fractured Families, LLC. is an organization made up of a board of 5 mothers whom have all been falsely accused of child abuse. Our mission is to protect and advocate for families falsely accused of child abuse due to unexplained fractures in their infant(s). Our vision is to end the fracturing of families resulting from an incomplete differential diagnosis at the discovery of unexplained fractures. We will accomplish this through the following avenues: educate medical professions and the public on the differential diagnosis of child abuse, support families currently facing wrongful child abuse accusations and advocate for research and policy change that will prevent further harm to innocent families.
So, consider again for yourself how you would feel being diagnosed with a disease or injury or illness and then being told you were the one that caused it when you weren't, like in the first scenario. More terrifying, imagine taking your precious child to the doctor or hospital because you were concerned for them and then having your whole world turned upside down by being falsely accused of abuse. I sincerely pray you never have to experience any of this. Take it from me and hundreds of other families, you wouldn't wish this on your worst enemy.
Things aren't always as they seem. It's been told that in medical school the analogy is made that "if you hear hooves beat, think horse, not zebra". Well, don't discount those zebras because they are real. Rickets is real. Ehlers-Danlos Syndrome can cause bone fragility. This experience didn't just happen to our family. It's happening all over the place. Within our Fractured Families community, there are hundreds of people scared, hurting, fighting...wanting answers. They're desperate to be reunited with their families and for the truth to be revealed. Please stop discounting the evidence and the ones whom are risking their good names trying to help families like ours.