Proud physician and mother

To whom it may concern,

I am writing this letter in support of Dr. Michael F. Holick. I am a board-certified physician in internal medicine and nephrology. Several years ago my husband and I found ourselves in the midst of the biggest battle of our lives that we could have ever imagined. We weren’t fighting a childhood cancer and the thought of losing our child to a disease. We were fighting children services and the thought of losing our children to the state. We had fraternal twins that were 4 months old. Our twin daughter was fussy one day and wouldn’t eat. When I changed her diaper, I noticed she seemed to cry when I moved her right leg. We called the pediatrician and left a message and while we awaited a phone call back, I took her to the local hospital and got an x-ray of her leg. En route to the hospital, I talked to the pediatrician on what x-rays to order of her hip as we were thinking perhaps she dislocated it. It turned out she had a transverse fracture of her femur. There was NO evidence of any bruising or soft tissue damage. The pediatrician informed me I would have to take her an hour away to a children’s hospital. I took the disc of her x-rays with me to the children’s hospital. When we arrived at the children’s hospital, they were more concerned with doing a head CT and a 23-film skeletal survey than they were about the pain my daughter was experiencing. I was concerned with all the radiation she was going to be exposed to at 4 months old since I have a personal history of metastatic thyroid cancer. They reported us to children’s services. Children services came in the middle of the night while I was in the hospital with her and made my husband wake our sleeping children and undress them and sign a safety plan that he wouldn’t be alone with our kids. This started our yearlong nightmare. When I first saw my daughter’s fracture, I thought she probably had cancer with my extensive cancer history and it was a pathological fracture. We were interrogated by the police and they came to our house with a search warrant and took things such as her crib, changing table and many other baby items. We recently got those items back SIX years later!

While children services were so sure this was abuse, I was just as sure it was not. They tried to tell me that if a child had this kind of injury it would take a lot of force to break a femur, but there were no external signs of force, not one single bruise. I asked the children’s hospital to do labs such as 25 vitamin D and intact PTH. I started to research other causes of infant fractures besides the well-known osteogenesis imperfecta. Our attorney told us if there was a medical reason for her fracture, the nightmare would be over. Well it turns out her vitamin D was low and her intact PTH was elevated. Our local pediatrician diagnosed her with rickets and wrote a letter to children services, but they didn’t go away. We went for a two week follow up appointment to the orthopedic surgeon at the accusing children’s hospital and I went to radiology to get a copy of all her x-ray’s and CT scan. I asked the orthopedic surgeon if the vitamin D was low and she told me she didn’t order one and to have my local pediatrician address it. I asked the surgeon if she had ever diagnosed rickets. Her response was “Yes we have” implying that she had never diagnosed it but perhaps someone else at the children’s hospital might have. She offered to refer us to a physician that specializes in metabolic bone disease. We were referred to a pediatric nephrologist for an appointment 3 months after the initial fracture. I started my daughter on vitamin D supplementation immediately when we found out it was low. I wondered how 2 my child could have Rickets? I was taking vitamin D and prenatal vitamins during my pregnancy. However, I was breastfeeding and the pediatrician never told me to give a vitamin D supplement to my twins. The children’s hospital also knew I was breastfeeding my daughter, but don’t worry they didn’t recommend vitamin D supplementation either. In fact, they documented her vitamin D was normal when it clearly fell out of the range from their own lab. I have included two pictures of the CT of her head that was read as “normal” by the accusing children’s hospital. While radiology is not my specialty, even I can tell her head CT was not normal for a four-month-old infant. IF she had been abused, she would have surely had skull fractures. Instead her skull showed evidence of craniotabes which again is consistent with Rickets.

I kept searching for answers as to what could possibly be causing these issues with my daughter. She was very flexible, had blue sclera and didn’t tolerate her feedings as well as her co-twin and spit up a lot more. She also had decreased muscle tone compared to her twin. We saw a pediatric geneticist who referred us to Dr. Holick as he thought she had more than just rickets.

When we were able to make the trip to Boston, a fifteen-hour drive from our home, Dr. Holick wanted to examine both of our twins and I, not just the one that was fractured. He noticed things when he examined them that no other physician had bothered to pay attention to. He did more of a detailed history of my pregnancy and the past medical history of my twins than the accusing children’s hospital. He wrote a letter supporting the diagnosis of rickets and Ehlers Danlos Syndrome. Most would think we had a favorable outcome in court as our case was eventually dismissed after a year. However, the emotional toll it took on my husband cannot be expressed in words. I will never be the same again. No one can know the pain and agony of being falsely accused of something they didn’t do until they are in those shoes. If I as a physician and a mother, cannot protect my children from medical misdiagnosis then frankly, I don’t know what mother would be able to. I will only take my children to an independent pediatrician that is NOT affiliated with a children’s hospital. I hope and pray that my children will never 3 need to go to another children’s hospital again as I have lost my faith and trust in their ability to care for my children. We later found out that our accusing children’s hospital had a policy to accuse every parent/caregiver that brought a child into the ER with a fracture under the age of 3 of child abuse no matter what the explanation was as to the injury. It also took a financial toll on us as well, as we spent over $35,000 in attorney’s fees and seeing other specialists to get a proper diagnosis.

Dr. Holick is not afraid to follow science and evidence even when they go against conventional wisdom. A true scientist should challenge every assumption and hypothesis. The scientific method doesn’t just encourage the relentless questioning of everything, it requires it. He has devoted much of his time and effort researching a disease process that few know anything about. A person with a rare disease will see on average 7 different doctors over the span of around 10 years before they are diagnosed. It wasn’t that I didn’t have the symptoms of Ehler’s Danlos syndrome before my daughter fractured her leg, but none of the physicians I saw for symptoms could put the picture together until I saw him. I saw at least 8 different endocrinologists before I saw Dr. Holick from the age of 19 until I was 35 and not one of them could put together an accurate diagnosis. I have never followed a textbook case. In fact, during the years I was in training to become a physician and while I am a practicing physician, most patients I find haven’t read the textbook. When Dr. Holick diagnosed me with Ehlers Danlos syndrome, it shed light onto my whole family tree of others who have EDS including my mother and grandfather. Again, it wasn’t that they didn’t have symptoms but no one was able to diagnose them accurately. One must think outside the box so to speak to be an excellent physician because not every patient will follow the algorithm that is published. Dr. Holick is an excellent physician. He should be commended for his perseverance and tenacity. I hope and I strive every day to be an excellent physician that can think outside the box and treat the patient in front of me and not one in the textbook.

In summary, Dr. Holick is an independent thinker, and frankly, medicine could use more independent thinkers. Doing what is right is rarely popular but in the end much more rewarding.

Sincerely,

A proud physician and mother.