September 11th 2020
Medical Executive Committee
Boston University Medical Center
80 E. Concord St.
Boston, MA 02118
To whom may concern:
I am N O, a Mother and a Grandmother. I am 56 years old and hold a BS in Medical Technology and a master’s in business administration. I worked in R&D for 11 years and in pharmaceutical sales for over 20 years. I am married and have one son. We live in Miami, FL
My son Michael was the most precious baby, but he had a flat side to his head which gave his head a column shape. I made a device where he wouldn’t be able to turn on that flat side. It took about a year for the column shape to become normal. Today, at age 23 he still has some flatness. I also found it odd how his arms disproportionately hung as he walked. When he was in high school, he had an abnormal EKG. The cardiologist told me it was an abnormal EKG, but it was his EKG and how his heart worked.
Years later (9/2020), Michael and Sara had a beautiful baby girl. They lived with the maternal grandmother. The baby was beautiful and was born with a large hemangioma on a leg, and another one on a finger. When she was 10 days old (Oct 8-9), Michael, Sara and maternal grandmother called me to let me know the baby had these bruise-like spots (it’s the only way we could describe them). They seemed weird and while we were all at the ER, I noticed how the marks began to fade. I should have known these weren’t bruises because I have ITP and bruises don’t appear and vanish within a day. Bruises also change colors. But at the time, all we knew was she had these marks and wanted to know what was causing them. The hospital did hematology studies, a spinal tap, blood cultures and a cat scan to rule out child abuse. I was appalled at the fact they would even think this was abuse. There were four grandparents with the kids in the room all worried wanting to know what was wrong with the baby. Baby was kept overnight. While in the room, another pediatrician came and said he wasn’t convinced these marks were bruises. He made a note but didn’t further pursue. Baby was released next day. Hematology tests came normal. Only one factor was missing. The hospital wanted the baby to have a consult with a Hematologist.
In the meantime, I watched the baby at home and even kept her for one night. I noticed how as I held her; she would arch her back so strongly that I would hold her head so she wouldn’t bump it on my shoulder. I also noticed, every time I changed her diaper, she would cry very loud. We all noticed the arching and the crying when her diaper was changed within the first two weeks of her life.
The baby was taken to the Hematologist a week later. At that appointment she had a mark on her arm. The Hematologist called another peer. He offered no explanation other than to send the baby to a dermatologist. I didn’t find this to be a reasonable explanation. I knew something wasn’t right but had no idea what was the cause.
When the baby was about 4 weeks old, the marks returned on her face. I told my son to take the baby to a different hospital as I didn’t feel Miami Children’s understood what was happening to her. At Holtz medical center, the doctors witnessed how quickly the spots vanished. Dr. Pilai told me the baby did not have a hematological condition, that her problem had to do with collagen. I clearly remember her word by word saying and I quote” this has to do with collagen, vascular, we have some cases here”. I asked her “Is it is a rare condition”- to which she said yes. Dr Pilai wanted to do genetic testing on the baby and have a group of Pulmonologists and gastros look at the baby. The baby had hemangiomas and Dr Pilai was concerned she might have them inside her lungs and GI. After the accusation when all medical records were subpoenaed, Holtz records clearly stated tests for EDS among other tests.
I walked out of Holtz hospital relieved as I felt this doctor was on the right track. We waited for the appointment given for end of November 2018. Two weeks later when Ciara was 6 weeks old and not due for her appt at Holtz, Ciara woke up with a swollen thigh. Parents and grandmother took her to pediatrician who sent her to Miami Childrens in an ambulance. This was the same hospital where they had no clue on what was happening with the baby.
My son and Sara were immediately accused after x-rays showed 22 fractures at different stages of healing. We were in shock, as both set of grandmothers had babysat the baby and would had never known we were holding a fractured baby. At was at this point that I realized these fractures were a side effect of whatever was the condition the baby had. Being trained to research and understand clinical studies, I dove into the internet googling infants with fractures at different stages of healing.
I went to the hospital with this clinical paper that discussed medical and clinical findings that differentiate intentional trauma versus underlying illness for infants with multiple fractures at different stage of healing. The baby did not have displaced fractures, she did not have soft tissue damage and no internal organ injury. Therefore, I demanded to both an orthopedic surgeon and a geneticist to test for all these possible conditions. They told me no. I asked them to look at the records from Holtz Hospital because Dr Pilai had mentioned genetic testing. No one cared. A DCF doctor had diagnosed as abuse and that was it.
Next day, we were asked to leave the hospital as criminals. I pleaded to DCF, to please demand the hospital test the baby. No one listened. Three days later we were in front of a Judge listening to the words Termination of Parental Rights and had a detective looking to jail the parents. Here we were. Baby was kept in the hospital and none of us were able to see her.
I walked out of that hospital angry. I thought how on earth can these doctors think this is abuse when all we had done was bring the baby to the hospital. The baby had been to every pediatrician appointment. I was angry, and in disbelief. I kept thinking “How on earth did I just witness common sense being lost in this hospital and medicine having gone out the window” I kept thinking how on earth can this be happening? I knew something was wrong with the baby and the state wanted to take her away and place her up for adoption as soon as possible.
I sat home wanting to die, in disbelief, sad, angry, heartbroken, confused. So many trips to the doctor and now the only medical explanation was abuse??? We all knew this wasn’t abuse but we didn’t know what had happened. I had not seen the Holtz records suggesting EDS. I was clueless. I had a list of every possible condition from the clinical paper, but all the doctors from Miami Children’s Hospital said the baby didn’t have any of those conditions. They didn’t even bother to test for any of them.
I dove into the internet. I googled different topics and viewed YouTube videos. My searches were based on infants with fractures at different stages of healing. I noted author names. This is how I found a physician named Michael Holick. I found Michael Holick and 4 other doctors. I reached out to them. Dr Holick replied next day. He wanted to talk over the phone to my son and Sara. Based on that conversation, he wanted to see Michael and Sara in person. I flew the kids to Boston. I was surprised to learn of Michael’s diagnosis. His arms, his EKG, fractures playing sports…perhaps even the shape of his head when he was a baby. I finally knew what my son had!
Sara also had EDS which explained her bruise like marks and fractures as a child. Sara’s vitamin D was low so the baby was born deficient! By now, I had seen the Holtz records stating baby needed to be evaluated for EDS! The same explanation given by Dr Holick! Dr Pilai had stated the same in Miami! Here we had two doctors who didn’t know each other arriving to same medical explanations! I totally understood what had happened to the baby. In the process I met 4 other experts from all over the US. We had a radiologist, a geneticist, an orthopedic surgeon, a former child abuse pediatrician professor and Dr Holick. They all saw the medical records and provided the same medical explanation.
Dr Holick and the other experts wrote reports. The state of FL insisted on taking us to a termination of parental rights trial. I had to spend 130,000 on lawyers fees – two civil attorneys and a criminal attorney. Dr Holick and other experts did not charge us one cent. My only expense was flying my son and Sara to Boston.
Our Judge heard 5 experts and dismissed the case. On his Judgement, he mentioned the State had no experience and knowledge of EDS as Dr Holick did. Judge also stated the State didn’t even have an endocrinologist see the baby. The Judge found Dr Holick’s testimony credible and backed up by two other physicians who he found knowledgeable and credible as well. The judge mentioned that Dr. Holick’s knowledge overall was superior to the doctors from the State. The Jude also mentioned the State also missed all the clinical findings that go along with EDS such as the baby’s blue sclera, hemangiomas, arching of her back, and vomiting of her formula.
As a grandmother I was appalled at how fast we went from trying to find out what was wrong with the baby to an accusation. I was in so much pain during those months that I remember telling my husband “I don’t care if my elder parents died today, because I don’t think I can hurt anymore” I had days when I wanted to die. My son was hurting without his baby. Sara was still bleeding from birth and her baby had been removed. None of the physicians at Miami Childrens cared to really diagnose the baby. The child abuse pediatrician did not have enough medical knowledge.
They took our baby away without doing a proper investigation. They took our baby away and were ready to put her up for adoption. They kept fighting us. When I summarize the below, I am appalled to what child abuse pedestrians are doing to families. They aren’t trained on real medicine and don’t want to trust the experts who do understand these illnesses such as Dr Holick.
- Child abuse pediatrician did not include Holtz finding on testing and evaluation required for EDS
- Child abuse pediatrician didn’t include all pediatrician visits or even bothered to talk to pediatrician
- Child abuse pediatrician did not medically evaluate parents or even meet them
- Child abuse pediatrician didn’t even meet me when I had watched the baby so many times
- Child abuse pediatrician didn’t have much knowledge on EDS and admitted to it
- Orthopedic surgeon from accusing hospital testified that based on the fractures he couldn’t state this was abuse because a metabolic bone diseases or genetic condition could cause the fractures. Yet no one from the accusing hospital wanted to further evaluate.
- The Radiologist from the hospital had no experience at viewing x-rays for patients with rare conditions such as EDS
- Sara’s vitamin D was deficient two months after giving birth, so baby was born deficient. Now we understood why the baby cried every time we changed her diapers. She was so fragile and we didn’t know.
- Judge stated they missed the hemangiomas, the blue sclera, the spitting up of food among other physical traits of EDS.
- Judge gave more credibility to Dr Holick and 4 other experts. Judge stated our experts overall were academically superior to the State’s doctors
We were kept away from Ciara for 8 months. Eight months of her life, her parents will never get back. I spent 130,000 on an unnecessary trial due to incompetence from a child abuse pediatrician who didn’t understand or properly investigate. She should have known her medicine prior to putting us through this. The thought of losing the baby forever still haunts me.
I am grateful to Dr Holick and his research team. My son, Sara and Ciara are part of the research being done. I am working with other parents in FL to change the laws. An accusation can’t be made until experts such as Dr Holick see the medical records.
What would have happened if I didn’t have the knowledge to search studies on the internet and reach out to authors? Michael and Sara would have lost their baby forever. This is sad and should not be happening in America. We need to cherish and support our medical experts such as Dr Holick.
During those months, I proudly told friends how Boston University had an expert who understood the condition and was doing researched on it. I hailed your Institution on having such an expert. I thought to myself, how come we don’t have experts in Miami. You have an asset in Dr Holick and in the name of medicine, you must support him. What would happen if we no longer support true medicine and research? Should all parents of infants born with medical conditions lose their babies? Should we move on and pretend babies are no longer born with medical conditions? With all due respect, think about this statement. This is America and in America we support science and research. We must not allow mediocre child abuse pediatricians easily diagnose child abuse because they don’t understand rare conditions.
A good child abuse pediatrician should work with experts such as Dr Holick instead of fighting in court because of pride. A good doctor admits he or she doesn’t know everything and confers with peers who have more experience. Again, you have an asset with such an expert as Dr Holick. Our Judge clearly saw it.
I am forever grateful to Dr Holick. I will never forget that night on November of 2018 when I saw he had replied to my email. He was willing to help and see my children. He held the truth to the insanity that happened to us and the baby. I am willing to testify even to the Senate to ensure experts like Dr Holick are supported. During Covid, I hear lots of talk about science and medicine. Boston University is among the few that holds a physician who understands the science and the medicine. This puts your Institution on the cutting edge.
I will forever be grateful to Dr Holick and my other experts because our baby stayed where she belongs – her zebra parents. I will always look up to Boston University for being among the best for EDS and research!
You may reach out to me anytime, please.
Miami, FL 33131