Hello everyone,

My name is Anne Ishee and my 8 month-old son has Osteogensis Imperfecta, also known as brittle bone disease. We have been to hell and back. Of course I had never heard of this disease prior to his diagnosis, but not  only have I learned more about this rare disease, but I have dug deeper and learned THOUSANDS of other families share the same story as I do.  Many of us have been accused of child abuse and have had our children removed from our care. Many no longer have medical rights and child protection/judges deny the right to appropriate medical testing.I now advocate for these families and direct them to appropriate resources, however, I cannot help those whom have had their parental rights terminated.I am presenting that all children who present with fracture (s) in NJ & throughout the US be tested for bone deficiencies such as diseases Osteogensis Imperfecta, EDS, Rickets, Vitamin D deficiency,and Paget's disease, all which can cause fracturing of the bones. My story below along with other stories. These stories are submitted anonymously.

***I took my son in to the ER at about 3 months old because I saw some bruising on his foot. The ER doctor saw it, watched one form right in front of her and sent us, on our own, to Children's Hospital Oakland. I had a gut feeling that I shouldn't go but I ignored it. Last time I ignored my gut. The doctors there decided that my son was abused, took full body xrays, which is when I believe his ankle was broken, then held us hostage over night, complete with deputy outside our door. We got sent home the next day with a referral to DCFS, who were actually pretty cool about the whole thing. We got the next set of xrays that showed a healing fracture on his ankle. Fast forward 6 months and we're outside playing, it's a beautiful evening. My husband drops my son.. Fractured his femur. We took him inside, I moved his leg a bit and said we're going to the ER now. I got home a few hours later and put my daughter and myself to bed, only to be woken up by a police officer at my door looking for my husband, who was still at the hospital with my son. The hospital called CPS who called the cops. Anyway, they transferred my son to another hospital to have his cast put on because they said he needed to be sedated, which we found out later was bullshit and we were transferred out of our police departments jurisdiction to facilitate removal of our children. I had to watch a social worker walk away with my daughter, I still gives me nightmares. Anyway, we were already in the process of being tested for OI and EDS so I kept demanding the tests be done even though the doctor was saying it didn't need to be done because she had spoken with the doctor at Children's who was positive this was abuse. Funny on her because the testing got done, we saw the geneticists and, with the newly assigned social worker on speaker phone and getting every word emailed to her, he clinically diagnosed our son with OI. Social worker goes straight to the judge and within 2 weeks, on our trial date, the case was dropped can our kids were returned. It happened to be our wedding anniversary too. Best present ever. We had to do 3 or 6 months supervision with the awesome social worker so it was more like a social hour than anything. She even brought coffee a few times. We chatted about her family, about how fucked up the system is and how she tries hard to be the different one, not the stereotypical social worker and it definitely shows. She didn't believe for a minute that we hurt our kids and it saved us. If all social workers were like her, we wouldn't be having this conversation.

***My 7 week old son who had been colicy every single night since he came home, was sitting in his bouncer one day while I was in our bedroom getting ready and his dad and two year old brother were in the living room with him. My husband rushes in and says when he had his back turned for a split second, our two year old pulled his baby brother out of his seat and at that point, he stopped moving his right arm. We went to the ER and they confirmed there was a fracture in his humerus and dcs would be getting involved. Never even did any bloodwork. Dcs made sure he immediately saw an abuse specialist. The abuse specialist also claimed there were three healed rib fractures. Again, no bloodwork or testing was ever done. My husband and I drove 15 hours away to see Dr. Holick who diagnosed me with EDS type 3. Dr. Miller diagnosed me as well. Also, when my son was almost one, his pediatrician who I hadn't been allowed to contact until then, finally ordered a vitamin D test. Regardless of supplementing with vitamin D fortified formula, he was still insufficient. When I talked to Dr. Holick about it, he said he educated opinion would be that if those were his levels almost a year later, then his levels at birth would have been almost non-existent. Our son with the fractures turns 3 in December and we still haven't gotten him officially tested due to not having a lot of free time to travel to see a specialist, but many doctors who we've contacted and given medical documents to, believe he not only has EDS, but also vitamin D deficiency at birth.

*** I know this doesn't have to do with the petition, but I highly recommend looking into DuPont for care instead of CHOP if you haven't made the switch. we started At CHOP, and left when an xray tech broke BOTH of my daughters tibias in a follow up xray!

***My son Jeffery Watt was born on 12/25/17.The pregnancy was normal and consisted of three ultrasounds. I was told by the ultrasound tech that his head was in the 98th percentile, and he was small and short. She asked if my husband was short. During my normal Ob visit I asked about his large head size, and she noted the ultrasound radiologist had changed the percentages that were put in by the ultrasound tech. Nothing was ever discussed thereafter. The day after he was  I noticed the strange cry again when I lifted his legs to change his diaper. I didn’t think too much of it and blew it off to him not liking his diaper changed, this continued for weeks. Other than some swelling to his head, which I was told was due to him coming through the birth canal fast, we were discharged two days later. A picture taken the day after birth shows a rib abnormality, which aligns with a healing rib that was discovered weeks later. He went for his well check up to a new pediatrician that we had never seen before. I mentioned his cries (which now included changing his clothing too) and she said “well, most babies don’t like to be cold”. She looked him over, and all seemed OK. One of the only questions she asked me was “is he always that red when he cries?” He was crying uncontrollably as she moved him different ways to check his body out. I then took him back to the pediatrician on 1/11 as he seemed very fussy, and his cries were cries of pain. Upon arrival he had a slight fever. I told the doctor of his pain when his legs are moved or during diaper changes. She asked me some questions and diagnosed him with acid reflux. She also noted his soft spot was a little larger than normal. I was told the diaper changes causing him pain as it caused pressure on his belly when lifting is legs. She said acid reflux is like having heartburn in your belly. She prescribed him zantac to be taken 2x daily. She asked me to come in the following day to monitor his fever and to bring a stool sample to test for a milk allergy. Fussiness still presented the following day, and I was told zantac will take a few days before seeing any effects. I was advised to thicken his feeds with 1 tbsp of rice cereal per 2 ounces of formula. The crying continued. On 1/13/18 I discovered Jeffery in is crib struggling to breathe. I noticed a small amount of very thick formula around his mouth. I patted his back and he was still struggling to breathe. I grabbed my bulb syringe suctioned and kept patting his back while held upright. He let out a very tiny cry and was still blue. I continued suctioning while yelling to my father to call 911. I took him outside where it was cold and continued suctioning until he started breathing. I called the afterhours line for his pediatrician and was advised to take to Atlantic City Hospital for monitoring. All vitals were normal. I told doctor I would like an oxygen to monitor so I can rest at night as I was extremely shaken up from the ordeal. He laughed, and said he was fine. Doctor did not thoroughly check baby, asked me if he was always red, and immediately diagnosed him with Sandifer’s syndrome. We were instructed to eliminate rice cereal, switch to soy formula, and upped the dosage of zantac. On 1/23 Jeffery had been crying unconsolably throughout the night. I took him to Atlantic City hospital where he was immediately brought into the back room due to his extreme crying. Doctor checked him, the extreme tearful crying continued off and on. Bloodwork was ordered, urine testing, and an abdominal x ray (which reveals a broken femur and rib). Jeffery’s father stated to the nurses that his leg was not moving. It was ignored. We were then admitted for observation. Multiple doctors came in through shift changes, and I was told that sometimes they can not find an answer, and it will resolve on its own. The doctor who discharged us diagnosed him with acid reflux and colic. Before discharge, the nurse changing his diaper lifted his legs to change his diaper. He began crying. I asked her if all babies that she takes care of cry that hard during diaper changes, she said many do. Note- all nurses and doctors throughout birth were very rough- lifting legs, pushing legs up, rotating hips. The following day I laid him on my bed and noticed his leg was not moving at all. Upon looking at it further I noticed swelling. I called the pediatrician frantic and mad. When we arrived, doctor gave Jeffery Tylenol and told us that she did not want to touch his leg, that he needed to see an orthopedic. She sent us to CHOP in Philadelphia. X-rays were ordered. The doctor came in and informed us that Jeffery had a broken femur, and a broken rib. We were beside our self. We could not figure out how this happened. She then told us his x rays showed some abnormalities in his bones. Now we are Worried. Our newborn son has broken bones and abnormal bones. Social workers did not take long to come in. She looked at us in disgust. Asked us some questions and told us she would need to inform Child protection. Many more tests were done that included bloodwork, urine, and MRI. We sat in a tiny room for 9 hours with our 2-year-old. Orthopedics came in and I asked them if this could happen at birth. She told me the fractures were at different stages of healing and that the femur fracture was fresh. Again, we are floored. A few different doctors came in and out and treated us like criminals. Before being admitted the Social worker told us that they would need to check out our two-year-old daughter for bruising. During this time, I had headed upstairs to our room. After checking our daughter, a lady came into the room my daughter was in and asked my husband if he would be paying by credit card or through health insurance. We had to pay for them to check her! By this time, it was around 2:00 AM. Jeffery and my daughter joined us in the room, and we were told the Summer could not stay. They both had to drive over an hour home in the early morning hours. I stayed awake the whole night. A child protection case worker came to my home where my two daughter and mother were present. She interviewed everyone in the house. She asked my daughter questions such as, “What does mommy do when the baby cries? Does anyone ever show you their privates? And do you miss your baby brother? She replied no, I miss my mommy.” There were no red flags. We are normal people. Child Protection then came to interview me that morning. She asked me many questions. She also told me that they will try to avoid removing the children from my care, and that they would be doing an abuse investigation. If negligence was found, they would in turn refer it to the prosecutor’s office. I was then interviewed by the hospitals SCAN team (child abuse specialists). They informed me they would be doing their own investigation. (Over 24 hours now of not sleeping) I was again asked many questions as to how this could have happened. The doctor then told me that his x-rays revealed weak bones. He told me, “little Jeffery may have limitations in his life (sports, wheelchair)”. I began crying and told him he was scaring me. He told me to look at my son and I wouldn’t feel so sad, no matter how he turned out. I now have many things going through my head. 1) My newborn son has broken bones 2) How did this happen? 3)What is wrong with my son’s bones, he may be in a wheelchair? 3) I may be going to jail for this. More bloodwork was taken, and orthopedics came in and placed my son in a Pavlik harness. Metabolic specialists came in and asked us many questions about our family’s history and whether there was a history of anyone having broken bones. We both denied. The metabolic team looked him over checking his spine, the whites of his eyes, and his soft spot. They told us they would be sending bloodwork for genetic testing, specifically testing for osteogenesis imperfects (brittle bone disease). They would be calling in 4-6 weeks with the testing results. By this time, it was Friday. The hospitals SCAN team determined they could not say definitively that it was abuse. DYFS came back and told us that the only way we could go home and to keep custody of our children was for them to put a protection plan in place. This consisted of someone supervising Jeffery and myself around all children always- keeping us within sight and sound. For them to approve people to supervise they would need more information to perform a background check which would take some time. We were told that we could not go home with our son alone, and due to child protection being closed on the weekend we would have to remain in the hospital until Monday. Over the weekend Jeffery had taken time off work and felt as though he was eligible for family leave time through his employer of 23 years. After Jeffery received the paperwork, we asked the CRNP Beth Hanson to fill out Jeffery’s paperwork when she came to check the baby. We were met with an angry face and he told “I don’t think you even need to be here right now” and she left the room. We were treated like criminals. Jeffery’s dad had every right to be there, his newborn son had a broken leg and rib! Monday rolled around, and we were there for a good part of the day. SCAN team still could not say whether his fractures were caused by abuse or not, but they admitted his bones were diffusely demineralized, and wormy. Two child protection team members came Monday evening, myself and Jeffery would have to ride with them in their vehicle home. I had to put Jeffery in his car seat as he screamed in pain for about 30 minutes, they did not care. The driver speeded home and made illegal U-turns in the city of Philadelphia with my newborn son in the car. When we arrived home my children were happy to see me as I had not seen them in a week. I was exhausted, mentally, and physically. By this time, I had barely eaten or slept. The hospital did not provide food or clean bedding to be during my stay and I could not leave the baby in the room without his father present. Child protection filled out a protection plan and I was told again that if the protection plan was broken the children would immediately be removed from the household. Child protection told me that the results of their investigation would be determined by the genetic test results. We then had a follow-up appointment at CHOP Philadelphia. Repeat x-rays were performed, the bones were still demineralized and showed large abnormalities. Upon being read by the radiologist, they now discovered a broken arm and possibly a healed 7th rib fracture. Both which they stated may have been inconspicuous from the first x-ray. I was immediately looked at as a criminal again and Jenny Closs CRNP told me she would be informing child protection of the new findings. We left heartbroken. On our way home for the hospital, Natalie from the SCAN team called and told me that she knows this was not abuse and discussed the abnormalities that were, and the radiologist had seen on his x-rays. I left scared, but relieved. I told our caseworker of Natalie’s findings. The following day we had an orthopedic visit at CHOP Philadelphia. He pointed out translucent spotting of the bones on x-rays. I asked him if these fractures were from birth. He agreed the rib fractures were probably from birth due to the amount of healing, but that the femur was fresh. He told us that he knew that this was not abuse, and that they were being cautious due to the high amount of abuse seen by the hospital. I asked our caseworker to call Natalie and the orthopedic. Natalie got ahold of the case worker and then her story changed. It was not determined that abuse could not be ruled out again, and Natalie would not fax over documentation ruling abuse out. The results came in a couple of weeks later, it had come back positive for osteogenesis imperfecta. A debilitating disease with no cure. I received no apologies. I informed child protection and they came and lifted the protection plan. As of this date:2/27/2018 our case is still open, although there have been no red flags. I am emotionally traumatized through this all. I carry my son around like an egg, and no other person is able to hold him. No doctors noticed his rib fracture where he was born. His x-ray films align with the picture that was taken from the hospital. You can clearly see in my picture taken that his rib is fractured. Fractures could have been prevented such as his arm and leg if it were not for him being misdiagnosed. He was in excruciating pain for many weeks and was not given pain medicine. I carried him around thinking he was a normal child for weeks- placing him in baby carriers, car seats, lifting his leg during diaper changes etc. Atlantic City did not notice either fracture during out overnight stay. X-rays were in front of their faces showing the breaks but discharged us with colic. Nurses continued being rough lifting his legs by the ankles to change his diaper (broken femur). It was stated by the orthopedic that even a simple diaper change could break a bone. He almost choked to death on his vomit from the rice cereal. All the nurses and doctors handling him may have been to blame to cause the fractures. This baby went through being physically tortured and was seen by multiple doctors that all misdiagnosed him. Child protection nearly removed the children from our care because they misdiagnosed him for so long.