Hospital

1
Hospital Midwives Training

• Maternal and Child Health
• Genomics and Newborn Screening Program

2
Introduction to Indianas Newborn Screening
Program
3
Why Do Newborn Screening?

• Required by Indiana law (Indiana Code 16-41-17)
• Early detection early treatment of newborn
  screening disorders
• Lessens severity of complications
• Improves quality of life
• Lack of early detection treatment can lead to
• Severe mental retardation
• Inadequate growth development
• Death

4
Mission of ISDH Newborn Screening Program

• Ensure that every newborn in Indiana receives
  state-mandated screening for all 46 designated
  conditions
• Maintain a centralized program to ensure that
  infants who test positive for screened
  condition(s) receive appropriate diagnosis and
  treatment and that their parents receive genetic
  counseling
• Promote genetic services, public awareness, and
  education concerning genetic conditions

5
History of Newborn Screeningin Indiana

• 1965 PKU only condition included in newborn
  screen
• 1978 Hypothyroidism added
• 1985 Galactosemia, homocystinuria, maple syrup
  urine disease (MSUD), and hemoglobinopathies
  added
• 1999 Biotinidase deficiency and congenital
  adrenal hyperplasia added
• 2003 Screening further expanded to include
  disorders detected by tandem mass spectrometry
  (MS/MS)
• 2007 Cystic fibrosis was added to the panel
• Currently, all infants born in Indiana are
  screened for 46 conditions (including hearing
  loss)

6
Indianas Newborn Screen

• Two parts
• Heel Stick Screening
• Includes Sickle Cell Program Cystic Fibrosis
  Program
• Also includes follow-up for metabolic and
  endocrine conditions on newborn screening panel
• Early Hearing Detection and Intervention (EHDI)
• Includes Universal Newborn Hearing Screen

7
Part I

• Heel Stick Screening

8
Heel Stick Screening

• Performed on a blood specimen taken from the heel
  of an infant shortly after birth
• Used to screen for certain genetic conditions
• Metabolic conditions
• Endocrine conditions
• Cystic fibrosis

9
Tandem Mass Spectrometry (MS/MS)

• Analytical technique that separates detects
  protein ions
• Enables newborn screening labs to quickly
  efficiently detect many conditions in a single
  process through use of dried blood spot specimens
• Disorders detected by MS/MS
• Fatty acid oxidation disorders
• Interfere with bodys ability to turn fat into
  energy
• Organic acid disorders
• Inability to break down certain amino acids
  their metabolites
• Other amino acid disorders (including tyrosinemia
  urea cycle disorders)

10
Roles in the Heel Stick Process Roles in the Heel Stick Process
Entity Role(s)
ISDH Ensure that mandated NBS is properly conducted Ensure that appropriate diagnosis management of affected newborns occur Designate contract with state NBS laboratory
Hospitals Screen all infants prior to discharge Maintain NBS log Notify parents to bring baby in for NBS if infant left hospital before NBS and parents did not sign religious waiver Educate parents about the importance of NBS Notify ISDH immediately if babies are discharged before receiving NBS Notify IU NBS lab if infants who need repeat screens cannot be contacted Notify IU NBS lab and ISDH if changes in demographic information are identified Notify parents if baby needs repeat NBS for any reason Notify primary care providers (PCPs) of NBS results Notify PCPs if baby does not return for repeat NBS
Midwives Alert parents about newborn screening Collect a heel stick sample directly or refer family to appropriate physician/facility for heel stick collection If family refuses NBS based on religious reasons, have parent(s) sign religious waiver submit religious waiver to ISDH NBS Program Notify ISDH NBS Program if an infant has not received a screen Notify ISDH NBS Program within 3 days of receiving NBS results
Public Health Nurses (PHNs) Assist ISDH in locating parents of infants who were not screened, had invalid or abnormal screens, or require diagnostic testing Educate parents about the importance of NBS and follow-up If parent(s) unable to get baby to hospital for repeat NBS, collect NBS specimens if trained certified
11
Newborn Screening Log

• All birthing facilities should maintain a Newborn
  Screening Log which documents the following
  information for all infants
• Specimen collection date
• Specimen submission date
• Date NBS results were received
• Results of NBS

12
Heel Stick Procedure

• NOTE The following procedures are modified from
  the heel-stick procedures slides provided by the
  New York State Department of Health

13
Heel Stick Procedure Step 1

• Equipment
• Sterile lancet with tip appropriately 2.0 mm -
  sterile alcohol prep
• Sterile gauze pads
• Soft cloth
• Blood spot card
• Gloves

14
Blood Spot Card (front)
15
Blood Spot Card (back)
16
Heel Stick ProcedureStep 2

• Complete ALL information on blood spot card.
• Do not contaminate filter paper circles by
  allowing the circles to come into contact with
  spillage or by touching before or after blood
  collection.

17
Heel Stick ProcedureStep 3

• Hatched areas (arrows) indicate safe areas for
  puncture site.

18
Heel Stick ProcedureStep 4

• Warm site with soft cloth moistened with warm
  water (up to 41o C) for 3 5 minutes.

19
Heel Stick ProcedureStep 5

• Cleanse site with alcohol prep.
• Wipe DRY with sterile gauze pad.

20
Heel Stick Procedure Step 6

• Puncture heel.
• Wipe away first blood drop with sterile gauze
  pad.
• Allow another LARGE blood drop to form.

21
Heel Stick Procedure Step 7

• Lightly touch filter paper to LARGE blood drop.
• Allow blood to soak through and completely fill
  circle with SINGLE application of LARGE blood
  drop.
• To enhance blood flow, VERY GENTLY apply
  intermittent pressure to area surrounding the
  puncture site).
• Apply blood to one side of filter paper only.

22
Heel Stick Procedure Step 8

• Fill remaining circles in the same manner as step
  7, with successive blood drops.
• If blood flow is diminished, repeat steps 5
  through 7.
• Provide care to the skin puncture site.

23
Heel Stick ProcedureStep 9

• Dry blood spots on a dry, clean, flat,
  non-absorbent surface for a minimum of four (4)
  hours.

24
Heel Stick Procedure Step 10

• Mail completed blood spot card to IU Newborn
  Screening Lab within 24 hours of collection.

25
Heel Stick Procedure

• NOTE
• Use of capillary tubes to collect heel stick
  specimens is NOT recommended or included as part
  of Indianas protocols

26
Valid vs. Invalid Blood Spot Specimens
27
Valid Heel Stick Specimens

• A newborn screen is valid when
• The child is at least 48 hours of age
• The child has been on protein feeding for at
  least 24 hours
• The NBS blood specimen is received by the NBS
  laboratory within 10 days of collection

28
Valid Specimens

• Fill all required circles.
• Allow blood to soak through to other side of
  filter paper.
• Do not layer successive drops of blood.
• Avoid touching or smearing spots.

29
Invalid Specimens
30
Specimen Quantity Insufficient for Testing

• Possible causes
• Removing filter paper before blood has completely
  filled circle or before blood has soaked through
  to second side.
• Applying blood to filter paper with a capillary
  tube.
• Touching filter paper before/after blood specimen
  collection (with gloved/ungloved hands, lotion,
  powder, etc.)

31
Specimen Appears Scratched/Abraded

• Possible cause
• Applying blood with capillary tube or other
  device.

32
Specimen Not Dry Before Mailing

• Possible cause
• Mailing specimen without drying for at least four
  (4) hours.

33
Specimen Appears Clotted or Layered

• Possible causes
• Touching same circle on filter paper to blood
  drop numerous times.
• Filling circle on both sides (front back) of
  filter paper.

34
NBS Results and Required Follow-up Actions
35
Possible Results of NBS

• Normal
• All values fall within normal range
• Invalid screen
• Specimen does not meet criteria for valid screen
• Specimen gt 10 days old
• QNS (quantity not sufficient)
• Abnormal result(s)
• Result(s) fall outside of normal range, but are
  not presumptive positive
• Additional testing may be required to confirm
  result(s)
• Presumptive positive result(s)
• Result(s) are outside the range of normal values
  and suggest presence of NBS condition
• Additional testing may be required to confirm
  result(s)

36
Heel Stick Follow-Up Guidelines (non-NICU
patients)
NBS Results Required Action(s)
Normal NBS Results Ensure that NBS results are available to PCP.
Invalid NBS Results Collect specimen for repeat NBS within 5 business days of initial screen.
Abnormal NBS Result(s) Collect specimen for repeat NBS within 5 business days of initial screen.
Presumptive Positive Result(s) Upon notification of result from NBS lab, collect additional NBS specimen (as necessary) within 48 hours.
37
Heel Stick Follow-Up Guidelines(NICU Patients)
Guideline Weight Requirement lt 2,000 g Guideline Weight Requirement lt 2,000 g
Type of Testing When to Collect NBS Specimen(s)
Routine Retesting (for all NICU patients) 1st specimen 0 6 days 2nd specimen 14 days 3rd specimen 30 days Monthly thereafter until discharge
Retesting due to Abnormal NBS Result Same as guidelines for non-NICU patients
TPN or Amino Acid- / Carnitine-Enhanced Formula Follow routine testing guidelines
For infants requiring transfusions For infants requiring transfusions
Pre-transfusion Collect before transfusion Follow routine testing guidelines
Post-transfusion Collect before 6 days of age Follow routine testing guidelines Collect final specimen at 2 4 months of age
NOTE If discharge occurs within 6 days of 2nd
or 3rd specimen, no specimen is required at
discharge.
Implemented October 1, 2007
38
NICU Specimens

• For presumptive positive / abnormal NBS results
  for any specimen drawn from a baby in the NICU,
  follow-up should be performed per guidelines for
  non-NICU patients
• Abnormal Collect repeat NBS specimen within 5
  business days
• Presumptive positive Collect additional
  specimen within 48 hours, as requested by NBS lab
  
• Exception congenital hypothyroidism
• Babies in the NICU are at increased risk for
  developing delayed hypothyroidism due to the
  immaturity of their endocrine systems
• Routine rescreening should be performed for all
  NICU babies per NICU guidelines
• Additional heel stick specimens used to check for
  development of delayed hypothyroidism

39
Required Follow-up Actions for Infants With Invalid Newborn Screens Required Follow-up Actions for Infants With Invalid Newborn Screens
Reason Required Action(s)
Infant discharged from hospital before 48 hours of age and on protein feed for lt 24 hours Collect NBS specimen before discharge Repeat NBS specimen should be collected after 48 hours of age, but no later than 120 hours (5 days) after birth Notify family that repeat NBS will be required
Discharged infant did not receive all mandated tests Immediately contact responsible physician mother via phone Immediately send written notification of need for repeat NBS to responsible physician mother Send copy of letter to ISDH NBS Program
Discharged infant did not receive all mandated tests and responsible physician cannot be contacted If repeat NBS not obtained within 3 days, notify ISDH NBS Program via telephone Send written notification to ISDH via fax or certified e-mail within 3 days
Discharged infant needs repeat NBS NBS laboratory will notify responsible physician birthing facility that re-screen is needed Hospital responsibilities 1) Notify parents to bring baby back to hospital for no-cost repeat NBS, 2) notify infants PCP of repeat screen results within 3 business days of receiving results, and 3) notify babys PCP if repeat screen not obtained before infant is 5 days (120 hours) old.
Discharged infant did not receive all mandated tests due to religious reasons Ensure that parents complete religious waiver Send signed religious waiver to ISDH NBS Program
40
Protocols for Infants Who Did Not Receive a NBS
41
Required Actions Infant Did Not Receive NBS
Reason Infant Did Not Receive NBS Required Action(s)
Discharged prior to receiving NBS Immediately contact the responsible physician and infants mother by telephone to notify him/her that a NBS specimen is required (specimen must be collected within 3 business days). Send written documentation of the need for a NBS to the responsible physician and infants mother. Immediately send written notification to ISDH. If responsible physician cannot be contacted or will not collect NBS specimen, contact ISDH.
Transferred to another hospital prior to receiving NBS Birthing hospital should receive copy of NBS results within 7 days. Contact hospital to which infant was transferred if no NBS results are received within 7 days.
42
Reporting to ISDH Heel Stick
43
Reporting to ISDH Heel Stick

• Birthing facilities should complete submit the
  Monthly Summary Report (MSR) to ISDH
• MSRs are due by the 15th of the following month
• For example, Januarys MSR is due before February
  15th
• Completed MSRs should include the following
• Cover sheet Contact information statistics
• Heel Stick Exception Reporting Form (2 PAGES)
• PAGE 1 infant data (includes transfer
  exception codes)
• PAGE 2 mother PCP data
• Attach copy of signed Religious Waiver if parents
  refused NBS based on religious reasons

44
MSR Cover Sheet (Demographic Summary Data)
45
MSR Heel Stick Exception Reporting Form, PAGE 1
(infant data)
46
MSR Heel Stick Exception Reporting Form, PAGE 1
(cont.)

• A few notes
• Each infant reported as an exception MUST have a
  transfer code AND an exception code
• Children born at the end of a month, who are
  screened at the correct time, do NOT need to be
  reported as exceptions anymore
• Formerly Initial Screen Next Month exceptions
• Birthing facilities are responsible for notifying
  ISDH NBS Program IMMEDIATELY by phone if a child
  is discharged without an initial NBS

47
MSR Heel Stick Exception Reporting Form, PAGE 2
(mother PCP data)
48
Indiana Newborn Screening Tracking Education
Program (INSTEP)

• ISDH won a 1.2 million, 3-year federal grant
  from HRSA in September 2009
• Funding from this grant used to develop INSTEP
• Includes web-based INSTEP application
• Used by birthing facilities, health care
  providers, PHNs, ISDH staff to data related to
  NBS and follow-up

49
INSTEP (cont.)

• 2011 INSTEP MSR trainings
• March 22nd, Parkview Hospital (Fort Wayne)
• April 14th, Columbus Regional Hospital (Columbus)
• May (TBD), Porter Hospital (Valparaiso)
• September 22nd, Deaconess Hospital (Evansville)
• October (TBD), Indianapolis
• Watch your e-mail for more information!

50
INSTEP (cont.)

• IMPORTANT!
• The MSR form changed to match the information
  requested in INSTEP
• New MSR form was distributed to all birthing
  facilities via e-mail in November 2010
• All birthing facilities required to use new MSR
  form beginning December 2010

51
INSTEP (cont.)

• For more information about INSTEP (including the
  new MSR form information on trainings), please
  contact
• Courtney Eddy, MS, CGC, LGC, MT(ASCP)
• INSTEP Director
• CEddy_at_isdh.IN.gov
• 317.233.9260

52
Cost of Newborn Screening
53
Cost Initial Repeat NBS

• Parents are billed for the initial newborn screen
• Cost of initial NBS 85.00 (effective July 1,
  2008)
• There is no charge for re-screens if baby
  receives repeat NBS at same hospital where baby
  born

54
Cost of Confirmatory Testing

• Most insurance plans will pay for confirmatory
  testing
• Medicaid will pay for confirmatory testing, if
  mother had Medicaid during pregnancy
• If mother has no insurance coverage
• She should immediately apply for Medicaid and
  take baby back for testing
• Medicaid will pay retroactively

55
Refusal of Newborn Screening
56
Refusal of NBS

• NOTE Parents can legally refuse newborn
  screening (NBS) only due to religious reasons.
• If parents refuse NBS, hospital staff/midwife
  should
• Have parents complete religious waiver
• Send signed religious waiver to ISDH NBS Program

57
Early Hearing Detection Intervention(EHDI)

• Part II

58
Early Hearing Detection and Intervention (EHDI)

• Three main components to the EHDI process
• Universal Newborn Hearing Screening (UNHS)
• Diagnostic audiology assessment
• For those infants who did not pass UNHS or have
  risk factors for hearing loss
• Enrollment in early intervention services (First
  Steps and/or private services)
• For those infants identified with permanent
  hearing loss

59
Why is Hearing Screening Mandated?
Hearing loss is the condition most commonly
detected at or shortly after birth

60
Why is Hearing Screening Mandated? (cont.)

• Early identification intervention help improve
  speech, language, social, academic development
• Early intervention enables parents to make timely
  informed decisions

61
Goals of ISDH EHDI Program

• Increase the number of babies receiving UNHS
• Reduce number of infants for whom no screening
  data is received at ISDH
• Remember...
• UNHS before 1 month of age
• Diagnosis before 3 months of age
• Early intervention before 6 months of age

62
Roles in the EHDI Process Roles in the EHDI Process
Entity Role(s)
ISDH Train support hospital screening programs Track all babies referred for appropriate diagnosis management Provide families with support
Hospitals Midwives Conduct Universal Newborn Hearing Screen (UNHS) for all newborns prior to discharge Re-screen any infant who did not pass initial screening (UNHS) in one or both ears Ensure that infants who are discharged without UNHS return before 1 month of age for screen Inform PCP about screening results If baby does not pass the re-screening, schedule follow-up diagnostic testing prior to discharge Provide each family with UNHS results and copy of Hearing Screening Results (See back of the Who, What, Why brochure) Report to ISDH all babies who 1) were not screened 2) did not pass UNHS or 3) passed UNHS, but had one or more risk factors for hearing loss
Public Health Nurses (PHNs) Assist ISDH in locating families of infants lost to follow-up who 1) need an initial hearing screen or re-screen, 2) need diagnostic assessment, and/or 3) need follow-up due to risk for delayed-onset hearing loss Educate families about importance of UNHS Ensure that parents who refuse NBS for religious reasons sign religious waiver (return to ISDH) Assist ISDH in obtaining necessary follow-up services for families
63
UNHS Screening Techniques
64
Screening Techniques UNHS

• Automated auditory brainstem response (AABR)
• Oto-acoustic emissions (OAE)

Note Parents want confident, knowledgeable
screeners. Some parents may wish to be with
their child when UNHS is performed this should
be offered when possible.
65
Screening Techniques Auditory Brainstem
Response (ABR)

• Sounds are presented through earphones
• Surface electrodes measure brainstem activity in
  response to sound
• Average test time 20 min/baby

66
Screening Techniques Oto-acoustic Emissions
(OAE)

• Sounds are presented to the ear canal
• Small microphone measures the cochlear response
  in the ear canal
• Average test time 5 15 min/baby

67
Effective Screening Practices
68
Effective Screening

• DO NOT SCREEN REPEATEDLY
• Remember your goal is not to pass every baby
• A baby with a hearing loss may falsely pass with
  multiple screenings
• Screening repeatedly is not cost effective or
  time efficient

69
Effective Screening

• Quiet Environment is important
• Keep conversation to a minimum
• Post signs to alert staff that a screening is
  taking place
• Screen away from noisy areas
• Move away from noisy equipment
• Move to a quieter location if possible

70
Possible Results of UNHS
71
Possible Results - PASS

• Screeners should tell parents
• Your babys hearing is adequate for the
  development of normal speech language skills.
  
• You should continue to monitor your childs
  speech language development.
• Talk to your babys doctor if you are worried
  about your babys hearing or speech development.

72
Possible Results DID NOT PASS (in one or both
ears)

• Screeners should tell parents
• Your baby did not pass his/her hearing screen in
  one/both ears.
• This might have happened for several reasons.
• This does not mean that your baby has permanent
  hearing loss.
• Your baby needs a diagnostic hearing test, done
  by an audiologist, in order to determine how your
  baby hears.
• Screeners should give parents a copy of What If
  Your Baby Needs More Hearing Tests?
• Words matter-Do not use words like failed
• Babies who do not pass UNHS should be
• Reported to ISDH EHDI Program
• Scheduled for diagnostic testing at a Level 1
  Audiology Center
• Referred/Reported to the PCP

73
Possible Results PASS, but has RISK FACTORS

• Screeners should tell parents
• Your baby passed his/her hearing screen in both
  ears, but has a risk factor.
• Your babys risk factor is _____________.
• This does not mean that your baby has permanent
  hearing loss.
• Your baby should have more testing between 9 and
  12 months of age, or sooner if there are concerns
• Screeners should give parents a copy of What If
  Your Baby Needs More Hearing Tests?
• Babies who have a risk factors for hearing loss
  should be
• Reported to ISDH EHDI Program
• Reported to their PCP for referral to a pediatric
  audiologist at 9-12 months of age (earlier if
  there are immediate concerns)

74
Risk Factors for Hearing Loss
75
Family History of Congenital / Childhood Hearing
Loss

• Includes family members with hearing loss in
  one/both ears since childhood
• Can be due to known genetic cause or unknown
  cause
• Excludes history of middle ear infections and/or
  tubes
• Excludes family members with known, non-genetic
  causes of hearing loss
• Exposure to rubella
• Meningitis
• Exposure to loud noise
• Trauma

76
In Utero Infection

• Includes conditions from TORCH screen
• Toxoplasmosis
• Most commonly affects babies whose mothers were
  exposed during 1st trimester
• Other
• Group beta strep (GBS)
• Syphilis
• Baby can be treated prior to delivery
• Rubella
• Most commonly affects babies when exposure occurs
  during 1st trimester
• Cytomegalovirus (CMV)
• Can be transmitted during pregnancy (placenta),
  during delivery (birth canal), or postnatally
  (breast milk)
• Herpes Simplex Virus (HSV)
• Most commonly affects babies whose mothers have
  active infection during delivery

77
Hyperbilirubinemia

• Risk factor for hearing loss when bilirubin
  levels exceed indication for exchange transfusion

78
Cranio-facial/Ear Malformations

• Babies who cannot be screened at the hospital due
  to no ear, partial ear, or no ear canal opening
  should be immediately referred to audiology and
  their PCP for diagnostic testing
• Babies with craniofacial anomalies who pass the
  screen should be referred for follow-up at 9-12
  months of age

79
Referrals for Infants with Risk Factors

• Babies with any of the 4 previous risk factors
  must be reported to the ISDH EHDI Program
• These children should receive follow-up testing
  from an audiologist around 9-12 months of age
• Families should be
• Informed about which risk factor(s) was/were
  identified
• Be provided with hearing language developmental
  milestones
• Told to monitor their childs progress
• Referred to ISDH their PCP
• Be informed of the importance of follow-up
  testing

80
Other Risk Factors

• Infants who have one of the following risk
  factors should be referred to their PCP
• Spent gt 5 days in the Neonatal Intensive Care
  Unit (NICU)
• Have a genetic condition or syndrome known to be
  associated with an increased risk for hearing
  loss
• Have or had bacterial meningitis (infection
  around brain spinal cord caused by bacteria)
• Have a parent or caregiver who is concerned about
  the babys hearing and/or language development

81
Reporting UNHS Results
82
Reporting UNHS Results

• On NBS blood spot card
• Complete all UNHS data on blood spot card
• NOTE Do not delay sending blood spot card in
  order to complete UNHS information
• If UNHS not complete before blood spot card is
  ready, tear out pink sheet from blood spot card
  for submission at a later date. Send blood spot
  card to NBS laboratory.
• On Monthly Summary Report (MSR) for ISDH, report
  all babies who
• Did not receive UNHS for any reason
• Attach signed Religious Waiver(s) if applicable
• Did not pass UNHS
• Passed UNHS, but have at least one risk factor
  for delayed-onset hearing loss

83
Why Are Blood Spot Card MSR Required?

• ISDH requires birthing facilities to submit blood
  spot cards and MSRs in order to
• Cross-check to ensure that hearing screen data is
  received for all babies
• Improve the accuracy of data reporting
• Improve the timeliness of follow-up

84
EHDI / UNHS Exception Reporting

• Report to ISDH all babies who
• Were transferred into / out of your birthing
  facility
• Were not screened for any reason (include copies
  of signed Religious Waivers, if applicable)
• Did not pass UNHS require diagnostic audiology
  evaluations
• Passed UNHS, but had risk factor(s) for
  delayed-onset hearing loss

85
Follow-up Services
86
Services Provided for Referred Infants

• Diagnostic audiologic testing to confirm hearing
  status
• Should be performed at Level 1 Audiology Center
• These locations have pediatric experience
  equipment necessary to perform diagnostic testing
• List of locations available on ISDH EHDI website
• Enrollment in early intervention services
• For infants with confirmed hearing loss
• Appropriate follow-up
• Includes appropriate amplification or treatment
• Financial coverage of EHDI follow-up services
• Medicaid Childrens Special Health Care
  Services Funding for diagnostic services can be
  obtained for families who qualify financially
• Private insurance Some insurance companies will
  cover diagnostic audiology services. Families
  should contact their insurance carrier to
  determine covered services identify providers.

87
Roles in the EHDI Follow-Up Process Roles in the EHDI Follow-Up Process
Entity Role(s)
ISDH Track follow each infant referred to achieve national 1 3 6 goals Provide educational technical assistance to birthing facilities, families, audiologists, physicians, early intervention providers Train EHDI Regional Consultants, Service Providers, Hospitals, Physicians
EHDI Regional Consultants Provide technical assistance, training, consultations to hospitals, families, community agencies Serve as resource to ensure that children with hearing loss receive appropriate timely care
First Steps Provide coordination of follow-up services for children with diagnosed hearing loss
Public Health Nurses (PHNs) Assist ISDH in locating families of infants lost to follow-up who 1) need an initial hearing screen or re-screen, 2) need diagnostic assessment, and/or 3) need follow-up due to risk for delayed-onset hearing loss Educate families about importance of UNHS Assist ISDH in obtaining necessary follow-up services for infants
88
EHDI Regional Consultants
Region Name Phone Number
1 Valari Koziel Evelyn Sell (219) 933 2094
2 Sherry Hodge Jamie Beck (765) 608 3277 [phone]
3 Michelle Escobar (317) 733 2285
4 Molly Pope (317) 233 1264
5 Julia Balbach Jayne Fields (812) 479 1411
6 Jay Cherry (812) 523 3323
89
How is Indiana Doing?2009 Outcome Statistics
for Heel Stick Hearing Screening
90
2009 Heel Stick Screening Statistics

• Approximately 89,000 births in Indiana
• 98.2 of infants received initial newborn screens
• 81 infants were confirmed to have a metabolic
  disorder
• 47 infants were confirmed to have an endocrine
  disorder
• 26 infants were confirmed to have a
  hemoglobinopathy
• 26 infants were confirmed to have cystic fibrosis
• 100 of infants with confirmed cases received
  treatment and follow-up

91
2009 Indiana Hearing Screening Statistics

• Approximately 89,000 births
• 103 birthing facilities reported
• 98.7 of babies were screened
• 2.3 were referred for diagnostic audiology
  evaluations
• 81.3 had normal hearing results
• 6.2 (124 children) were diagnosed with permanent
  hearing loss
• 7.4 were lost to follow-up/documentation
• Additional 30 babies who were born in 2009 were
  identified with hearing loss in 2009
• Additional 67 babies who were born before 2009
  were identified with hearing loss in 2009

92
2009 Indiana Diagnostic Statistics

• 87.6 of children born in 2009 received follow-up
• 0.6 of these children have been evaluated but
  need additional testing
• 1.4 moved out of state
• 0.5 are deceased
• 2.5 had families who declined follow-up
• 7.4 LTF/D
• Mean age of first evaluation 3 months (88.2
  days)
• Median age of first evaluation 2 months (56
  days)
• Mean age of diagnosis 3 months (93.7 days)
• Median age of diagnosis 2 months (58 days)

93
Contact Information for ISDH Newborn Screening
Program

• Director of Genomics and Newborn Screening
• Bob Bowman
• Heel-stick Program
• INSTEP Director Courtney Eddy
• Sickle Cell Program Director Lisa Mani
• Genomics Cystic Fibrosis Programs Director
  Malorie Hensley
• Newborn Screening Data Quality Specialist Iris
  Stone
• Early Hearing Detection and Intervention (EHDI)
  Program
• State EHDI Director Gayla Hutsell Guignard
• EHDI Follow-Up Coordinator- Julie Schulte
• UNHS Nurse Consultant Bess Godard
• Lead Audiology Regional Consultant Molly Pope
• Guide By Your Side Program Coordinator- Lisa
  Kovacs
• EHDI Parent Consultant Julie Swaim
• To contact the ISDH Newborn Screening Program
• Call [phone]

94
Newborn Screening It takes a team!