Sent: Thursday, December 06, 2018 9:51 PM
To: Holick, Michael F <mfholick@bu.edu>
Subject: My 7 week granddaughter has 22 fractures
Dear Dr Holick:
Allow me to introduce myself. I am Nydia a grandmother on paternal side. I am 55 and work as a pharmaceutical rep for multiple sclerosis.
I had read about you and when I found fractured families I was told about you. On November 15th our lives changed and all I’ve done is research.
Granddaughter born on 9/25. Full term, 8 pounds 21 inches. A bit more of history, she’s been taken to every regular pediatrician check up for newborns. Parents live with maternal grandmother and great grandmother. I have watched her for a weekend and two Sunday’s and seen her every week as well.
Within her first week of life, she developed a Hemangioma on a finger. She was born with a birth mark on a leg that looks like one. We went to ER several times after her birth (1.5 weeks) for bruises that would come and go. First time a spinal tap was done and blood cultures to rule out infections. They also did a head scan to rule out abuse. A follow up Hematology appt stated she had no blood disorder and a liver test was done to check for cancer due to an elevated test. She had the bruise spots during that visit.
Later that week my granddaughter’s bruise spots appeared all over on a Friday afternoon. She got fuzzy and her spots gradually appeared on her skin. I told my son to take her to a different ER for a second opinion. At that visit, the Attending Resident called DCF and was rude to them. By the morning her bruises had disappeared. At this point I was at the hospital and was able to talk to the Hematologist , who stated these weren’t bruises and mentioned collagen/capillary possible disease, genetic testing and follow up with pulmonologist and GI doctors. She said bruises don’t appear and disappear as they witnessed at the hospital. Doctor also mentioned this was not a blood disorder. I was happy because I felt we were on track to investigate what was wrong with her. Sadly, we ended up at ER prior to that appointment.
On Nov 14th when she was 7 weeks old, parents noticed a swollen leg and took her to pediatrician who sent her to ER. At Hospital X-rays found 22 fractures. The current one was her femur. Some fractures had already healed. I haven’t seen the records yet but I was told even her toes were fractured. I heard rib, feet, leg and hand fractures. DCF removed baby and parents haven’t formally been arrested. Judge said this was atrocious and asked for TPR. At the hospital The detective said he would allow for a second opinion. He said the more opinions the better.
We were all shocked because except for when the bruise like spots occurred, she appeared to be a normal baby. The only time she cried was when we would change a diaper.
I was on a flight from Boston when I heard of the fractures. I did some research and went prepared to ask the specialists. I asked the orthopedic surgeon if she had internal organ injury, soft tissue injury, displacement or head damage. The answer was no to all. I asked him if there was a chance she began to fracture while she came out of birth canal and he said no. I asked him how could a baby be abused to the tune of 22 fractures and look clinically normal. He said it was possible. I asked the geneticist at Hospital about OI (didn’t know about any of these diseases until I read up on the flight). She said it wasn’t OI because she didn’t present with blue sclera. I told her not all babies present with it. I proceeded to mention testing for vitamin D, EDS, calcium, metabolic bone disease, cooper – all to which she said none caused fractures. It was clear to me the hospital and DCF had decided this was abuse. Common sense went out the window and medicine wasn’t practiced. Later that day DCF came and kicked us out of the hospital.
So I have been reading a lot. I don’t know what testing was done and my son is getting all records now. We have all records from prior ER visits. Attorney has subpoena everything from current ER visit. He mentioned taking the baby to a Geneticist at University of Miami to check for OI and EDS. I think Hospital did Col 1A and B.
I have asked my son and daughter in law to obtain all of her Obgyn records as well because I want to see all testing done on her as well.
I mentioned your name to my attorney. While he knows the legal part, I know I’m ahead of him on the medical part and can be a proactive Grandparent by pointing him in the right directions. I know this is not abuse and am upset at how hospitals don’t practice medicine and how DCF doctors act. In the meantime, we have delayed diagnosis for my granddaughter. I’m her advocate.
Would you be able to look at the X-rays and records? What other information would you need? What steps do I need to take? I apologize for any typo errors. I have typed this on my iPhone as I don’t want to use my work computer.
Kind Regards,
Nydia O
Miami, FL
Dr. Holick’s Evaluation of Parents and Daughter who was found to have 22 fractures at 7 weeks of age
I saw and evaluated the parents in my clinic. Based on their medical histories and physical examinations I concluded that they both have Ehlers Danlos hypermobility type. I was provided pictures of their daughter. The daughter had gray blue sclerae and increased joint hypermobility in her hands. She had a history of easy bruisability, mottled skin, she was constantly spitting up when being fed, she was able to easily arch her back into a C like position and she flushed easily. The parents were concerned about blue and red marks that appeared and disappeared on their 7 week old daughter’s skin. The pediatrician was unable to provide any explanation for this.
The fact that the parents both had EDS hypermobility type which is associated with capillary fragility causing easy bruisability and skeletal fragility meant that their daughter had a 75% chance of acquiring it from them. The daughter had many classic medical conditions and physical findings based on the parents observations that was consistent with her having this genetic disorder. I explained to them that the appearance and disappearance of the red and blue blotches was due to dysautonomia. The daughters flushing was caused by mast cell hypersensitivity and her constantly spitting up was due to gastroparesis not GERD (gastrointestinal reflux disease). All of these medical conditions are associated with this genetic disorder and need to be recognized by pediatricians.
I testified for the parents. The judge found my testimony to be credible based on my extensive experience with infants, children and adults with EDS and supported by my publication in a well-respected peer-reviewed journal documenting that infants of parents that I diagnosed as having EDS hypermobility type are at high risk for easy bruisability and fragility fractures due to normal handling when they acquire this genetic disorder from one or both parents.
The judge ruled that the child be returned to the parents forthwith.
Please see the letters from the parents as to what they experienced as a result of to being falsely accused child abuse and how I helped them be reunited with their child in ‘Letters from Parents Who Dr. Holick helped’.