(Please print this survey and hand-write your information. Then mail the completed survey to Debby Hines at Protect Our Families.com.)
OI vs. Abuse - Family Survey for Dr. Mininder Kocher, Childrens Hospital in Boston, MA. We realize it may be difficult to remember details so please just complete the survey as best as you can. Feel free to continue answers on another sheet of paper as needed. Thank you for your help and participation.
I. Birth information:
1.1a) Sex of child: o M o F
1.1b) Childs date of birth (optional):
1.1c) Childs weight at birth:
1.1d) Childs height at birth:
1.1e) Babys age (gestational weeks) at birth:
1.1f) Babys delivery status: o premature o full-term
1.1g) Babys relationship to parents: o biological child o adopted child
1.1h) Parents marital status: o married o engaged o dating o not married o divorced o separated
1.2a) Please indicate: o Single child birth o Multiple births
1.2b) If multiple, please indicate: o twins o triplets o other
1.3a) Babys Delivery? o natural o forceps o vacuum-extraction o planned c-section o emergency c-section
1.3b) If c-section, why?
1.4a) Was baby in breech position? o Yes o No
1.4b) If yes, when was the breech position discovered? o during pregnancy o during birth process
1.4c) If breech, was an external version performed? o Yes o No
1.4d) If yes, when did this occur?
1.5a) Was babys placenta/umbilical cord measured at birth? o Yes o No o Do not know
1.5b) If yes, what was the measurement?
1.5c) Were there any abnormal findings regarding the placenta/umbilical cord? o Yes o No o Do not know
1.5d) If yes, please describe:
1.6a) Was baby considered healthy at birth? o Yes o No
1.6b) If no, please describe:
1.7a) Did baby have other health concerns? o Yes o No
1.7b) If yes, please describe:
1.8a) Was baby in the Intensive Care Nursery? o Yes o No
1.8b) If yes, for how long (days/wks/mos)?
1.9) Total time before infant was discharged home (days/wks/mos):
1.10) Additional comments:
II. Pregnancy information:
2.1a) During pregnancy, did mother have any complications? o Yes o No
2.1b) If yes, indicate: o pre-eclampsia o gestational diabetes o preterm labor o reduced fetal movement o other
2.1c) Please describe:
2.2a) If mother had preterm labor, was she given magnesium sulfate? o Yes o No
2.2b) If yes, for how long?
2.3a) Did mother have any health concerns before or during pregnancy (e.g., diabetes, immune disorder)? o Yes o No
2.3b) If yes, please describe:
2.4a) Did mother take any medicine during pregnancy (e.g., asthma medicine, antacids, immunizations)? o Yes o No
2.4b) If yes, please list:
2.5a) Did mother have any infections in her blood/body per pregnancy or birth records? o Yes o No o Do not know
2.5b) If yes, please indicate: o group B strep o cytomegalic virus o syphilis o other
2.6a) Did mother keep a certain diet during pregnancy? o Yes o No
2.6b) If yes, please indicate: o vegetarian o vegan o other
2.7a) Did mother have any difficulty with morning sickness or with maintaining proper nutrition? o Yes o No
2.7b) If yes, please describe:
2.8a) During pregnancy, did mother o smoke or o drink alcohol? o Yes o No
2.8b) If yes, please list how often:
2.9) Additional comments:
III. Babys Infancy: (before fractures were found)
3.1a) Was mother: o breastfeeding o using formula o both
3.1b) If formula was given, what kind? o soy o low iron o other
3.1c) Please list formula brand:
3.2a) If mother was breastfeeding, was she also taking Vitamin D or prenatal vitamins? o Yes o No
3.2b) Did the breastfeeding mother wear full body clothing which might have reduced sun exposure? o Yes o No
3.2c) How frequently were mother and baby outdoors? o frequently o occasionally o rarely o never
3.3a) Had baby been taken earlier to the pediatrician due to babys discomfort? o Yes o No
3.3b) If yes, what was the deduction? o colic o gas o reflux o lactose intolerant o change formula o other
3.3c) Please describe:
3.4a) Had baby been taken earlier to the ER due to babys discomfort? o Yes o No
3.4b) If yes, please describe:
3.5a) Was baby on any medication (e.g., Mylanta antacids, asthma medicine)? o Yes o No
3.5b) If yes, please list:
3.6) Additional comments:
IV. First indications of injury: (after fractures were found)
4.1a) What was your first indication that baby had an injury or medical problem?
o lack of movement of limb o swelling of limb o unusual position of limb o baby seemed to be in pain o other
4.1b) Did you bring your child to the hospital or clinic? o Yes o No
4.1c) If yes, why? o for a scheduled doctor appointment o after a fall/mishap - went immediately to ER o other
4.1d) Please explain the original reason for the doctor appointment or ER trip:
4.2a) Who requested the x-rays? o doctor o parents o doctor did not think x-ray was needed, parents insisted
4.2b) When did doctor suspect child abuse? o immediately after examining baby o only after viewing the x-rays
4.2c) Who made the first call of suspected abuse to Social Services?
o pediatrician o family doctor o ER doctor o orthopedist o other
4.2d) Where did this occur? o pediatricians office o doctors office o ER o childrens hospital o other hospital
4.3a) Cause of injury, if known:
4.3b) Did you know at the time that baby was injured?
o Knew right away baby was injured o Did not realize that earlier accident injured baby o No known accident
4.3c) If there was an accident with baby, what was the doctors view of the relevance of the accident and injury?
o possibly accidental o not possible in healthy infant, must be abuse o possible only if child has OI, rule OI in/out
4.4a) Who made the final determination of abuse? o child abuse doctor o other doctor o other
4.4b) Where did this occur? o pediatricians office o doctors office o ER o childrens hospital o other hospital
4.4c) Did the doctor who determined abuse talk to the parents: o before police hold o after police hold o never
4.4d) Please describe what happened:
4.5a) Date wrongfully accused/suspected of child abuse (month/year):
4.5b) Location (city/state) where accused (optional):
4.5c) What Social Services county handled your case (optional)?
4.6a) Age of your child (weeks/months/years) at that time:
4.6b) Was this your first child? o Yes o No
4.6c) If not, list ages of other children at that time:
Please complete the following information according to when the accusations occurred:
4.7a) Mothers age:
4.7b) Mothers race: o Caucasian o African American o Hispanic o Asian o other
4.7c) Mothers occupation:
4.7d) Fathers age:
4.7e) Fathers race: o Caucasian o African American o Hispanic o Asian o other
4.7f) Fathers occupation:
4.7g) Please describe babys ancestry origin:
4.7h) Parents income: o under $15,000 o $15,000-$25,000 o $26,000-$40,000 o $41,000-$75,000 o 0ver $75,000
4.8) Additional comments:
V. Tests taken during police hold in hospital:
5.1) What tests were run in the hospital during the police hold? (check all that apply)
Tests for abuse:
o X-rays to check for more fractures
o Bone Scan to identify all fractures
o CT or o MRI to check for head trauma
o CT of body to check for internal trauma
o Blood test to check for malnourishment
o other:
Tests to consider a bone disorder:
o DEXA bone density scan
o Metabolic blood test for bone disorders
o Genetics doctor evaluation
o OI skin biopsy
o OI DNA blood test
o Family medical history
o other:
5.2a) Were there any abnormal findings for bone disease noted at that time? o Yes o No o Do not know
5.2b) If yes, please describe:
5.2c) If yes, were these abnormal findings viewed as: o significant o possibly significant o not relevant
5.3a) How many total fractures did your child have?
5.3b) Please list the location and how old the fractures were:
5.4a) Did any fractures require a cast or splint? o Yes o No
5.4b) If yes, please describe:
5.5a) Did any of the fractures require corrective surgery? o Yes o No
5.5b) If yes, please describe:
5.6a) Were there symmetrical healed fractures (e.g., both legs, both arms)? o Yes o No
5.6b) If yes, please list:
5.7a) Was there any bruises or scratches on the babys skin? o Yes o No
5.7b) If yes, was there any bruising associated with the fractures? o Yes o No
5.7c) Please describe location of bruises:
5.8a) Did baby have retinal hemorrhaging in the eyes? o Yes o No
5.8b) Did baby have a subdural hematoma in the brain or skull? o Yes o No
5.9) Please describe any additional injuries aside from the fractures:
5.10a) If you had older children, were they also o examined or o x-rayed for abuse? o Yes o No
5.10b) If yes, what were the results?
5.11a) Is your family medical history supportive for OI (e.g., fractures, weak teeth, osteoporosis)? o Yes o No
5.11b) If yes, did you share this information with the child abuse doctor? o Yes o No, did not know at that time
5.11c) If yes, how was the family medical history viewed: o significant o possibly significant o not relevant
5.11d) Please describe the family history known at that time:
5.12) Additional comments:
VI. Police hold over, baby in foster care:
(if your child was not removed from your home, skip to Section VII: Getting a Diagnosis)
6.1) After the police hold in the hospital ended, was your child placed in foster care?
o Yes, foster care
o No, with relatives
o No, baby went home to parents and relative
o No, baby went home to parents
6.2) If older children were involved, where did they go?
o Foster care o Relatives o Parents and relative o Parents
6.3a) Was mother breastfeeding baby when this happened? o Yes o No
6.3b) If yes, did Social Services allow it to continue? o Yes o No o At first allowed it, then later refused
6.4a) If baby was in foster care, how long did you have to wait until you were granted the first visit?
6.4b) How much visitation were you allowed each week?
6.4c) Where did the visits occur:
o Social Services o Foster home o Relatives home o Parents home with supervision o Psychologists office o other
6.4d) Were you allowed to attend your babys doctor appointments? o Yes, all o Yes, some o No
6.5a) Did Social Services support further medical testing for bone disease? o Yes o No
6.5b) Did the Judge support further medical testing for bone disease? o Yes o No
6.5c) Were you able to schedule bone doctor appointments for your baby as long as you had approval from Social Services? o Yes o No
6.5d) Did Social Services deny or refuse certain doctor appointments? o Yes o No
6.5e) If yes, please describe:
6.6a) If baby was in foster care, did the foster persons ever take your baby to the ER? o Yes o No
6.6b) If yes, describe reason for ER:
6.7a) If baby was in foster care, was baby sick or injured during this time? o Yes o No
6.7b) If yes, describe:
6.8) What additional tests were run while in foster care/protective custody?
o X-rays o Bone Scan o Genetics doctor evaluation o Metabolic blood test o DEXA bone density scan o OI skin biopsy o OI DNA blood test o other
6.9a) If more x-rays were taken while in foster care, were new fractures found? o Yes o No o Do not know
6.9b) If yes, please describe (include age of fracture):
6.9c) How was the new fracture determined? o comparison x-rays o comparison bone scans o both o other
6.9d) Did the child abuse doctor acknowledge the new fracture? o Yes o No
6.9e) If yes, what was his opinion?
o indicated bone disorder o insisted parents abused child during supervised visit o disregarded
6.10) Additional comments:
VII. Getting a diagnosis
7.1a) Was your baby diagnosed with a medical condition that caused susceptibility to fractures? o Yes o No
7.1b) What was the diagnostic process?
o evaluation at doctors office o mailed x-rays and records to doctor o both
7.2a) Were you able to get babys medical records and x-rays? o Yes, all o Yes, some o No
7.2b) Were you denied access to some or all of the records and x-rays? o Yes o No
7.2c) If denied, who decided this? o Social Services o child abuse doctor o hospital o other
7.2d) Did you get a court order for the remaining records? o Yes o No o No, was not granted a court order
7.3a) Please list the date when child was diagnosed (month/year)?
7.3b) Age of your child at time of diagnosis (weeks/months/years)?
7.3c) How long had your child been in protective custody before getting a diagnosis (wks/mos)?
7.4a) Did expert doctors determine abnormal findings per the x-rays? o Yes o No
7.4b) If yes, check all that apply: o osteopenia/low bone density o mild bowing o cortice thinning o hyperplastic callus o wormian bones on the skull o beaded ribs o frayed/cupped metaphysis o growth plate variants o metaphyseal bands o increased bone density o normal variants o symmetrical periosteal new bone formation o other:
7.5a) Did expert doctors determine abnormal findings per metabolic blood tests? o Yes o No
7.5b) If yes, please list what vitamins or minerals were low or elevated (e.g., calcium, vitamin D, copper, parathyroid, magnesium, alkaline phosphatase, phosphorus)?
7.6a) Did your child have a DEXA bone density scan? o Yes o No
7.6b) If yes, what was the childs age when DEXA was taken?
7.6c) What were the DEXA results? o normal bone density o lower than normal values o low bone density
7.6d) Did doctors determine osteopenia/low bone density? o Yes o No
7.6e) If yes, how? o DEXA scan o x-rays o both
7.6f) If no DEXA, why? o Social Services would not allow it o No DEXA facilities for infants in my city
7.7) What was the diagnosis? o Osteogenesis Imperfecta (OI) o TBBD o Hyperparathyroidism o Hypophosphatasia o Ehlers-Danlos Syndrome o Caffeys disease o Idiopathic osteoporosis o Copper deficiency o Scurvy o Osteopenia/Rickets of Prematurity o Hyper-IgE Syndrome o Rickets o Accidental injury o Birth trauma o Other
7.8a) If OI was diagnosed, was this based on o scientific or o clinical findings? (If OI was not the diagnosis, skip to section VIII)
7.8b) Type of OI diagnosed: o Type I o Type II o Type III o Type IV o Type V o was not specified
7.8c) Severity of OI: o very mild o mild o moderate o severe
7.9a) Did your baby have the skin biopsy test? o Yes o No
7.9b) If yes, how long did it take for the results to come back?
7.9c) If yes, what were the results? o conclusive for OI o less collagen noted o inconclusive/negative
7.9d) Where was the skin sample taken on the babys body?
7.9e) Did your baby have to take a second biopsy sample due to contamination? o Yes o No
7.10a) Did your baby have the DNA blood test? o Yes o No
7.10b) If yes, how long did it take for the results to come back?
7.10c) If yes, what were the results? o conclusive for OI o abnormality noted o inconclusive/negative
7.11) What were your childs clinical OI symptoms? (check all that apply)
o Fractures
o Fractures continued in foster care
o Blue sclera very distinct
o Light gray sclera
o Low bone density noted on x-rays
o Low bone density noted on DEXA
o Light brown/gray, fragile teeth
o Hypermobility of the joints (pop/dislocate)
o Joint flexibility (e.g., bend fingers/wrists backwards)
o Loose ligaments (easily sprain ankles/wrists)
o Double jointed fingers/toes
o Wormian bones on skull x-ray
o Bowing of bones
o Triangular shaped face
o Smooth, thin skin
o Excessive sweating
o Easy bruising
o Poor wound healing
o Hernias
o Heart valve problems
o Heart murmurs
o Scoliosis
o Hearing loss
o Bowed legs
o Flat feet
o Other:
7.12a) Was the family medical history supportive for OI symptoms? o Yes o No
7.12b) If yes, what was your familys clinical OI symptoms? (check all that apply)
o Fractures
o Blue sclera very distinct
o Light gray sclera
o Low bone density noted on x-rays
o Low bone density noted on DEXA
o Osteoporosis
o Light brown/gray discolored, fragile teeth
o Hypermobility of the joints (pop/dislocate)
o Joint flexibility (e.g., bend fingers/wrists backwards)
o Loose ligaments (easily sprain ankles/wrists)
o Double jointed fingers/toes
o Wormian bones on skull x-ray
o Bowing of bones
o Triangular shaped face
o Short stature
o Smooth, thin skin
o Excessive sweating
o Easy bruising
o Poor wound healing
o Hernias
o Heart valve problems
o Heart murmurs
o Scoliosis
o Hearing loss
o Bowed legs
o Flat feet
o Skin disease (e.g., eczema, psoriasis)
o Metabolic deficiencies (e.g., vitamin D, calcium)
o Other bone problems (e.g., corrective leg braces)
o Other:
7.12c) Who had OI symptoms? (check all that apply)
o mother o maternal grandmother o maternal grandfather o other maternal relatives o father o paternal grandmother o paternal grandfather o other paternal relatives
7.12d) Please describe:
7.13) Additional comments:
VIII. Getting children home
(If your child was not removed from your home, skip to Section IX: Resolving Juvenile case)
8.1a) Were you eventually able to get your baby out of foster care? o Yes o No
8.1b) If yes, where did baby go? (check all that apply)
o with relatives o parents with relative o relatives first, then later to parents o to one parent o to both parents o one parent first, then both parents o other
8.1c) How long was baby in foster care?
8.1d) How long was baby with relatives?
8.1e) Date when baby came home to parents (mo/yr):
8.1f) Babys age when back home with parents (mo/yr):
8.2a) Did the diagnosis help to get your child home?
o Yes o No, was not able to get a diagnosis o No, Social Services ignored the diagnosis
8.2b) Aside from the diagnosis, what other factors helped to get your child home? (check all that apply)
o positive psychologist evaluations o positive parent educators evaluations o character reference letters o parents cooperation o positive lie detector o reference letter or evaluation by church minister o other
8.3a) If one parent was required to live apart, how long until allowed to return home to family?
8.3b) Were parents required to o divorce or o end their relationship in order to get child home? o Yes o No
8.4) Was the scientific OI skin biopsy or DNA test results a factor in getting your child home? (skip if OI was not the diagnosis)
o Yes, child came home soon after the positive scientific results were back
o Yes, child came home but only after our attorney proved the significance of the positive scientific results
o No, child came home based on clinical diagnosis (scientific results were not back yet)
o No, child came home based on clinical diagnosis (even though scientific results were inconclusive/negative)
(Answer questions 8.5a-e only if you had older children, as well as baby, in foster care)
8.5a) Did older children come home to parents? o Yes o No
8.5b) If yes, date they came home to parents (month/year):
8.5c) How long were the older children in foster care?
8.5d) How long were the older children with relatives?
8.5e) Childrens age when back home with parents (mo/yr):
(Answer questions 8.6a-f only if you had a new baby born during the juvenile case)
8.6a) After new babys birth, where did baby go? o Foster care o Relatives o Parents o Parents and relative
8.6b) If new baby was in foster care, did new baby come home to parents? o Yes o No
8.6c) If yes, date new baby came home to parents (mo/yr):
8.6d) How long was the new baby in foster care?
8.6e) How long was the new baby with relatives?
8.6f) New babys age when back home with parents (mo/yr):
8.7) Additional comments:
IX. Resolving Juvenile case
9.1a) Date when your involvement with Social Services ended (month/year)?
9.1b) How long did your case last until it was over (weeks/months/years)?
9.2a) Were you billed for foster care fees? o Yes o No
9.2b) If yes, were you required to pay? o Yes o No
9.2c) Total amount you paid for foster care fees:
9.3a) Mothers Attorney: o court-appointed attorney o private self-paid attorney o no attorney
9.3b) Fathers Attorney: o court-appointed attorney o private self-paid attorney o no attorney
9.4a) If no attorney, why? o not needed o represented self o could not afford/was denied court attorney
9.4b) If court-appointed attorney, were you granted court funds for a medical expert? o Yes o No
9.5) Total money you spent on your defense for the juvenile case?
o under $15,000 o $16,000-$45,000 o $46,000-$75,000 o $76,000-100,000 o over $100,000
9.6a) Did the juvenile case go to trial? o Yes o No
9.6b) If no, how was your juvenile case settled?
o case unsubstantiated
o case dismissed
o case resolved through negotiations that child protection was needed, no trial, and child home
o other
9.6c) Please describe how your case was settled:
9.7a) Did media coverage (TV or newspaper articles) help to resolve your case? o Yes o No
9.7b) If yes, please describe:
9.7c) Did local/state government officials call Social Services on your behalf? o Yes o No
9.7d) If yes, please describe:
(Answer questions 9.8a-c only if you had a juvenile trial)
9.8a) What medical evidence was presented at trial? (check all that apply)
o doctor reports o doctor testified o psychologist report o other
9.8b) Who determined the trial finding? o Jury o Judge only, there was no jury
9.8c) What was the finding?
o Child protection was not needed, child returned home
o Child protection needed, child allowed home to parents based on reunification plan
o Child protection needed, one parents rights were terminated, and child home to the other parent
o Child protection needed, both parental rights terminated, and child adopted by relatives
o Child protection needed, both parental rights terminated, relative adoption denied, child adopted
o other
9.9) If parental rights were terminated in the juvenile case, were you also charged criminally? o Yes o No
9.10) Additional comments:
X. Resolving Criminal case
(if not applicable, skip to section XI: Current History)
10.1) Who was the main focus of suspicion by the police? o mother o father o other
10.2a) Was anyone charged with child abuse? o Yes o No
10.2b) If yes, who? o mother o father o other
10.2c) Did the criminally charged parent have: o court-appointed attorney o private attorney o no attorney
10.2d) If court-appointed attorney, were you granted court funds for a medical expert? o Yes o No
10.3) Total money spent for criminal case?
o under $15,000 o $16,000-$45,000 o $46,000-$75,000 o $76,000-100,000 o over $100,000
10.4) What was the outcome of the criminal charges?
o charges dropped o settled in negotiations/no trial o accepted plea bargain/no trial/probation only
o accepted plea bargain/no trial/reduced sentence o had trial
o other
10.5a) If criminal trial, what medical evidence was presented? (check all that apply)
o doctor reports o doctor testified o psychologist report o other
10.5b) Outcome of criminal trial: o found innocent o found guilty o other
10.6) If parents were found innocent at the criminal trial, was child then returned to them? o Yes o No
10.7) Additional comments:
XI. Current History:
11.1) Date survey completed:
11.2a) Childs current age (months/years):
11.2b) Childs current weight:
11.2c) Childs current height:
11.3) Please describe your childs current condition/recent fracture history/status:
11.4) What do you think could be done to help future families from being wrongfully accused?
Please feel free to share anything that you feel has not been covered on this survey.
Thank you so much for your time and help.
When finished with survey, please mail to:
Debby Hines
Protect Our Families.com
477 Country View Rd
Hudson, WI 54016