Submitted by Heather

Rickets an Epidemic On June 3, 2010 my five and a half week old daughter was introduced to the Child Protection Team in a hospital in a local hospital' by diagnosing her as being a victim of child abuse. I brought my new born daughter to the hospital, after she woke up screaming in pain when i moved her arm. Upon multiple x-rays we found out that she had a fracture in her right arm that had a transverse configuration, without any evidence of external injury (we later learned that a transverse configuration is a typical fracture morphology in a pathologically fragile bone). Not understanding how this could have happened to my daughter, my boyfriend and I had no explanation for the injury.

Apparently because of the injury and our inability to explain how it happened, the doctors at the hospital suspected child abuse and contacted Child Protection Services (not the actual name of the agency) who sent social workers to the hospital to interview us. After several hours of questioning, they transferred us to another hospital.where we were immediately admitted to the Child Protection Department. After further x-rays and bone scans the hospital found multiple micro fractures throughout my daughter’s body, and a slight bilateral subdural hematoma.

My daughter’s initial physical examination revealed an asymptomatic child. She did not have any lesions, rashes, bruises, no external swelling, not a mark on her. The hospital did not conduct a careful assessment of my daughter’s physical condition or of my clinical and social history. They assessed her vitamin D levels which were low-normal, but not mine; they did not question me about my nutrition during pregnancy or my delivery. They did not take into consideration that I called her pediatrician on two separate occasions with medical concerns; one being that she had severe clicking in her shoulders which we later learned is due to joint laxity, a symptom of Rickets or that she had broken blood vessels in her right eye. Also knowing that I was breast feeding, he told me to stop drinking milk "stating that humans are the only other mammal to drink other mammal milk, which is not right" and he felt that me drinking milk contributed to my daughters gas discomforts. The pediatrician's office told me these were "NORMAL" occurrence's and not indicative of a need for a medical work up. Both hospital's did not act in an unbiased and reflective manner or take into consideration the totality of evidence. Instead, without conducting a complete evaluation, they quickly diagnosed my daughter as a victim of inflicted injury.

On June 4th my five and a half week old daughter was taken out of my care and placed in the state foster care system. Upon being involved with the child protection agency, the State appointed my daughter an attorney. Attorney S, has become an angel for my daughter and to my family. Thankfully, Attorney S took her job seriously and set out to determine the truth of what happened to my daughter.

After interviewing me and my family and reading the transcripts of the initial interviews of my boyfriend and I written by the emergency social workers from the hospitals, Attorney S requested all of the x-rays, bone scans and medical reports from both hospitals.

Attorney S asked several doctors to look at the medical information and give their unbiased, expert opinions who refused to touch the case because the hospital in question is very reputable. Thankfully, she finally reached out to Dr. Patrick Barnes, a world-renowned neuroradiologist who agreed to look at my daughter’s case. He referred Atty S to Dr. David Ayoub a diagnostic Radiologist out of Chicago IL, to look at the xrays and bone scans specifically. After an initial review of the films, Dr. Ayoub proceeded to acquire every medical record in existence on my daughter including my prenatal records and ultrasounds, my daughter’s delivery and pediatric records and he had me fill out a medical questionnaire survey.

After careful and thorough review of ALL medical reports he saw that my daughter was suffering from a metabolic bone disease which he diagnosed as INFANTILE RICKETS in the state of healing, and that her bones were in a fragile state. He also stated that my daughters skull showed poor mineralization along the sutures and large areas or poor mineralization in the center portion of the skull plates. In addition the parietal skull was flattened.

As Dr. Ayoud was evaluating my daughters medical reports, he aksed Atty S to suggeste that I go see Dr. Michael Holick, a world renowned endocrinologist. Upon his full evaluation of me, Dr. Holick found me to be suffering from Osteomalacia, essentially the adult form of Rickets, and also possibly Elhers Danlos syndrome which is a genetic deficiency that cross ties to my daughters metabolic bone disease.

This process took two months to complete and now, because of the lack of follow through by multiple health care providers including the Doctors at the hospital, my daughter has been without one of the things most critical to her young development, a caring and loving mother. And I have been robbed of some of the most precious moments I could have had with her.

Because it took so long to get the proper diagnosis and after being in foster care for almost two months, the child protection agency then decided to place to my daughter with her biological father who abandoned us when I was 2 months pregnant. He had not seen or even asked about his daughter until he was contacted by the child protection agency on June 4th, almost six weeks after her birth.

It has now been 3 months since I have had my precious baby girl. Even with two outstanding doctor reports from two nationally distinguished doctors, the child protection team doesn't seem to care that my daughter was taken from her mother in error. Because the child protection agency is essentially a body of law in itself, they have no legal obligation to take this new medical information about my daughter and myself and do anything with it.

It would take pages to explain the twisted system that is child protection services but this system is set up in such a way that there actually isn't a forum to bring this new information up in front of a judge unless the whole case goes to a trial, which would be months away.

This child protection agency and all child protection agencies were set up to protect children, which I totally respect, but where are the laws set up to protect the children and families from these agencies? What do you do when the Doctors and the the child protection agencies are the ones responsible for Neglect or Abuse?

Still to this day neither the child protection agency, or my daughters biological father have taken my daughter to get looked at by a specialist, to make sure that she is getting what she needs to fix her deficiency. (Thankfully, Dr. Ayoub assures me that because she has been fed formula since she was removed from my custody, I exclusively breast-fed her for the first 5 weeks, another risk factor for rickets, she is most likely safe from further fractures.) I am not allowed to get any medical information about my daughter as her bio dad has temporary custody. He is only allowing me to see my now 4-month-old daughter one day a week, at a supervised visitation center. In what kind of world does any of this seem right?

I just hope that other families and children can be saved by being made aware of this epidemic. Health care providers need to be educated on these issues. Most doctors are not taught to know what to look for when they are dealing with rickets or other metabolic bone diseases. And when Neonatal Ricktes are in the stages of healing the vitamin D and calcium levels are usually normal or high. That's why it's important to test, everything !!! They need to do their due diligence in ruling out EVERY medical possibility before making their diagnosis's. They need to help save families, not help break them,I have started an informational page on Facebook called RICKETS an EPIDEMIC please go to the page and "LIKE" the page in support and to help spread awareness. On the site you will see the near 1,700 people working hard to get policies and regulations changed, to stop things like this from happening.