Public Health Nurse Training

Public Health Nurse Training
Maternal and Child Health Genomics and Newborn Screening Program

Introduction to Indiana’s Newborn Screening Program

Why Do Newborn Screening?
Required by Indiana law (Indiana Code ) 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

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

History of Newborn Screening in 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)

Indiana’s 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

Part I Heel Stick Screening

Used to screen for certain genetic conditions
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

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 body’s 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)

Roles in the Heel Stick Process Public Health Nurses (PHNs)
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

PHN Request for Assistance Form

Request for Assistance Form
PHNs are responsible for documenting all follow-up activities on the “Request for Assistance” form Form should be returned to ISDH within 8 days and should document: Follow-up activities are completed Parents fail to bring child in for initial or repeat NBS PHN is unable to contact parents Identified changes to demographic information The “Request for Assistance” Form should be returned to: Courtney Eddy, INSTEP Director, via: Fax: (317) Certified (secure) only Note: PHNs who need to set up a certified account should notify ISDH for assistance.

REQUEST FOR ASSISTANCE Form (example)
Date: March 28, County: Everywhere Please advise the parent(s) of the infant named below that a repeat test or initial test for newborn screening is necessary. This can be done at the hospital of birth or any other facility that has the heel-stick test kit. The hospital of birth is preferable as generally there is no additional charge for a rescreen. If the parents have any questions regarding this request, they may contact the Newborn Screening Program at the Indiana State Department of Health, (317) Reason: Early Discharge ______ <24 Hours Protein Intake ______ Poor Sample ______ Transferred before Screen ______ Abnormal Result ___X___ Other: Decreased T4 Infant's Name: Dahl, Ken D.O.B: 2/14/ SEX: M Birthing Institution: Meridian Hospital Hospital Number: Mother's Name: Dahl, Mary Doctor’s Name: Marcus Welby Address: 234 Center Drive Doctor’s Address: ABC Street Anytown, IN Anytown, IN 46302 Telephone: Doctor’s Phone:

Need Follow-up report returned by: 5/9/2007 PHN Contacts: Telephone Call: Yes ___X__ No _____ Home Visit: Yes _____ No _____ Date Remarks 1) / / Phone call to Mary: will take baby to hospital for repeat screen___________ 2) _____/_____/_____ ______________________________________________________________ 3) _____/_____/_____ ______________________________________________________________ 4) _____/_____/_____ ______________________________________________________________ 5) _____/_____/_____ ______________________________________________________________ No Such Address: __________ Will Obtain Screen At: __________________________________________________ Public Health Nurse: _Vickie Nurse, R N Telephone: USE BACK OF FORM FOR ADDITIONAL REMARKS PLEASE RETURN THIS FORM TO: INDIANA STATE DEPARTMENT OF HEALTH NEWBORN SCREENING PROGRAM / MCH 2 NORTH MERIDIAN SUITE 700 INDIANAPOLIS, IN INCOMPLETE – PHN did not record date/location of repeat NBS. This form should not be returned to ISDH until missing documentation is added.

Need Follow-up report returned by: 5/9/2007 PHN Contacts: Telephone Call: Yes ___X__ No _____ Home Visit: Yes _X___ No _____ Date Remarks 1) 05/01/2007 Phone call to mom: got voic ; left message to call Vickie, PHN at Everywhere Health Department, phone #-_ 2) 05/02/2007 No return call from mom: made 2nd call to mom; left message for mom to call Vickie, PHN 3) 05/04/2007 No return call from mom: sent letter to mom re: the need for baby to have a repeat newborn screen 4) 05/07/2007 Still no response from mom: made home visit; spoke with mom and explained the importance of the baby having a repeat NBS for further evaluation. Mom said she will take baby back to birthing hospital tomorrow. 5) 05/08/2007 Received call from mom who said she took baby back for re-screen today at 9:00 am. No Such Address: ____________________________________________ Will Obtain Screen At: Meridian Hospital on 05/08/07 at 9:00am Public Health Nurse: _Vickie Nurse, R N Telephone: USE BACK OF FORM FOR ADDITIONAL REMARKS PLEASE RETURN THIS FORM TO: INDIANA STATE DEPARTMENT OF HEALTH NEWBORN SCREENING PROGRAM / MCH 2 NORTH MERIDIAN SUITE 700 INDIANAPOLIS, IN COMPLETE – Includes documentation of all PHN activities, as well as date & location of repeat NBS.

Heel Stick Procedure NOTE: The following procedures are modified from the heel stick procedures slides provided by the New York State Department of Health

Collecting Heel Stick Specimen
If parent(s) / guardian(s) are unable to get the baby back to the hospital for the repeat screen, PHNs can collect NBS specimen, if trained and certified Trained & certified PHNs are responsible for: Proper collection of heel stick blood sample Proper handling & transport of blood spot specimen to the IU NBS lab

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

Blood Spot Card (front)

Blood Spot Card (back)

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.

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

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

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

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

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.

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.

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

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

Heel Stick Procedure NOTE:
Use of capillary tubes to collect heel stick specimens is NOT recommended or included as part of Indiana’s protocols

Valid vs. Invalid Blood Spot Specimens

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

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.

Invalid Specimens

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.)

Specimen Appears Scratched/Abraded
Possible cause Applying blood with capillary tube or other device.

Specimen Not Dry Before Mailing
Possible cause Mailing specimen without drying for at least four (4) hours.

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.

Possible Results of Newborn Screening

Results of NBS Normal Invalid screen Abnormal result(s)
All values fall within normal range Invalid screen Child does not meet criteria for valid screen Specimen > 10 days old QNS (quantity not sufficient) Abnormal result(s) Result(s) fall outside of normal range Additional testing may be required to confirm result(s) Presumptive positive result(s) Suggests abnormal result(s)

Confirmatory Testing

Confirmatory Testing - PHN Responsibilities
If confirmatory testing for NBS conditions is required: PHN will receive requisition and name of lab that will perform the test NOTE: Blood specimen can be drawn at birthing facility PHN should provide the following information to ISDH NBS Program: Name of hospital/birthing facility that will collect the specimen Approximate date of collection Name of laboratory performing confirmatory testing

Cost of Newborn Screening

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

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

Cost of Confirmatory Testing (cont.)
Check with local hospitals or birthing facilities regarding payment options available to help family If assistance is still needed, contact: Barb Lesko at IU Newborn Screening Laboratory (800) Bob Bowman at ISDH (888)

Refusal of Newborn Screening

Refusal of NBS NOTE: Parents can legally refuse newborn screening (NBS) only due to religious reasons. If parents refuse NBS, PHN should: Have parents complete religious waiver Document refusal of NBS on “Request for Assistance” form Send signed religious waiver & completed “Request for Assistance” form to ISDH NBS Program

Early Hearing Detection & Intervention (EHDI)
Part II Early Hearing Detection & Intervention (EHDI)

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 intervention) For those infants identified with permanent hearing loss

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

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

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

Roles in the EHDI Process Public Health Nurses (PHNs)
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

UNHS Screening Techniques

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.

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

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: – 15 min/baby

Possible Results of UNHS

Possible Results - PASS
Screeners should tell parents: “Your baby’s hearing is adequate for the development of normal speech & language skills.” “You should continue to monitor your child’s speech & language development.” “Talk to your baby’s doctor if you are worried about your baby’s hearing or speech development.”

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 Referred/Reported to the PCP

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 baby’s risk factor is _____________.” “This does not mean that your baby has permanent hearing loss.” “Your baby should have diagnostic 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 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)

Risk Factors for Hearing Loss

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

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

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

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 physician for diagnostic testing Babies with craniofacial anomalies who pass the screen should be referred for follow-up at 9-12 months of age

Referrals for Infants with Risk Factors
Babies with any of the previous 4 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 child’s progress Referred to ISDH & their PCP Be informed of the importance of follow-up testing

Other Risk Factors Infants who have one of the following risk factors should be referred to their PCP: Spent > 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 baby’s hearing and/or language development

Follow-up Services

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 and follow-up intervention services

Financial Coverage of EHDI Follow-up Services
Medicaid & Children’s 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.

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

EHDI Regional Consultants
Name Phone Number 1 Valari Koziel & Evelyn Sell (219) 933 – 2094 2 Sherry Hodge Jamie Beck (765) 608 – 3277 (260) 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

PHN Responsibilities – EHDI Follow-Up Services

Request for Assistance Form
PHNs are responsible for documenting all EHDI follow-up activities on the “Request for Assistance” form Form should be returned to ISDH within 8 days, or when: Follow-up activities are completed Parents fail to bring child in for initial or repeat UNHS PHN is unable to contact parents Changes to demographic information are identified The “Request for Assistance” Form should be returned to Gayla Hutsell Guignard, ISDH EHDI Program Director via: Fax: (317) Certified (secure) only Note: PHNs who need to set up a certified account should notify ISDH for assistance.

Reasons for Referral to PHN
Follow-up Action Not Screened (No Hearing Status) May occur due to early discharge from birthing facility or equipment problems Refer infant back to birthing facility for UNHS. Explain the NBS law & the importance of early identification of hearing loss NOTE: Parents may have refused screening based on religious objections. Ensure religious waiver completed & returned to ISDH. Passed, but with Risk Factors Follow-up testing recommended at 9 – 12 months of age Explain developmental milestones Explain the importance of monitoring speech & language development Refer families to Level 1 Audiology Center and/or PCP for follow-up Did Not Pass UNHS Find out if follow-up testing completed. Document location, date(s), and result(s) of follow-up testing. If no follow-up testing performed, explain importance of follow-up testing to families If parents do not feel a problem exists, explain that mild or unilateral (one ear only) loss may not be noticed, but could impact language development & educational progress. If questions persist, contact ISDH or EHDI Regional Consultant. Lost to Follow-Up Try to locate family. Document all attempts to find family. If family located, discuss importance of hearing screen. NOTE: Babies older than 6 months will require diagnostic assessment. Refer family to PCP and/or First Steps for follow-up. If unable to locate, complete “Request for Assistance” form & return to ISDH.

How is Indiana Doing? 2009 Outcome Statistics for Heel Stick & Hearing Screening

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

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

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) 81

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 (888) Visit the ISDH Newborn Screening website at

Newborn Screening: It takes a team!
Primary care physicians & other health care providers Public health nurses Newborn Screening: It takes a team! Hospitals & hospital personnel ISDH IU Newborn Screening Laboratory Early intervention providers (First Steps)

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