Perinatal Database: Still &Pre- Viable fetus

Dr Neelam Aggarwal

Addl Prof, PGIMER, Chandigarh

GENESIS OF THE PROJECT

GENESIS OF THE PROJECT

STILL BORNS NEWBORNS ,N,BD,SICK

PRE-VIABLE

Retracing the journey

• From conception to delivery

ROAD MAP

• Not mentioned in MDGs

• Absent from global indicators of disease

• Interventions rarely studied/evaluated

• Indirect reflection of maternal health

• Estimates of stillbirth rates rely on registration data, national survey and special studies

“Owing to limited data it is difficult to assess the share of congenital syphilis and birth defects, which are amongst the many causes of still birth”

Still birth surveillance

OVERVIEW STILLBIRTH ISSUES: HIDDEN REALITY

One of the common adverse outcomes of the pregnancy

More than 3.2milloin stillbirths occur globally each year

98% still births happen in low and middle income countries

Country variation in stillbirth rates

2.65 million third trimester stillbirths each year

Applying high-income country stillbirth definitions (second and third trimester)

this number may be 40% higher

10 countries account for 66% of the world’s stillbirths – and also 66% of neonatal deaths and over 60% of maternal deaths 1. India 2. Pakistan 3. Nigeria 4. China 5. Bangladesh 6. Dem Rep Congo 7. Ethiopia 8. Indonesia 9. Tanzania 10. Afghanistan

Irony of still births

Most poorly recognized from the countries of most common ocurrence .

Mismatch of Burden to Action

• Hidden reality

• Social taboo

• Lack of data

International Awakening

Global Community - Goal By 2020

For countries with SBR >5 , reduction in still

birth rate by 50% from 2008 rate

For countries with SBR <5,to eliminate all

preventable stillbirths

Why ,When and Where still birth

occurs

Supported the development of stillbirth protocols AND has developed and pretested the tools for still births

“Need to make standard protocols for

SB surveillance to generate data for

preventive planning & effective

interventions to reduce SBs”

Invisibility & Confusions

Out of sight out of mind

Challenges of making stillbirth protocol

• Missing numbers

• Varied definitions

• Classification bias

• Records

• Uniformity

• Choose relevant in

the national context

Defining stillbirths

WHO international

definition

Mammoth Task ?

STILL BIRTH SURVEILLANCE: EXPERTS

• Clinical experts, neonatology, pathology, school

of public health – National imminence

• Experts from WHO, UNFPA, ICMR, MOHFW.

• All WHO CCs

Brainstorming sessions

• Definitions , Classification ,strategies

Finalization of definitions

• Definition

• Count from 20 weeks gestation

• Categorize

• Early 20-27 weeks

• Late > 28 weeks

• Assign cause from CODAC simplified

Genesis of still birth surveillance proforma

First Meeting at Chandigarh (Nov. 2011)

“Development of protocols for stillbirths review & guidelines for sentinel surveillance”

Conclusion :Gestation of still birth & Consensus of classification system could not be finalized

Second Meeting at Chandigarh (FEB 2012) •Definition and gestation of still birth finalized Early 20-27 weeks Late > 28 weeks •Pretesting of proforma to be done by modified CODAC classification.

•Third meeting at Chandigarh(July 2013)

“Orientation workshop on stillbirth surveillance tools” Autopsy requisition to be included in the proforma . 5 centers identified for the testing of the surveillance proforma.

Still birth proforma

What next ?

Surveillance proforma tested by sharing retrospective data of 25,177 deliveries by 5 centers and analyzed(July-Oct 2013)

Prospectively two live births were enrolled for each still birth (Sep to Nov 2013).A total of 291 still births and 606 live births

were recorded in this proforma and analysis was done.

5 more centers recruited and proforma filling continued in NNPD Project (Nov 2013-Contd)

Meanwhile, PGIMER, Chandigarh became the nodal centre for NNPD Project.

Prevention and control of BDs in SEAR: Strategic framework(2013-2017) - Target reduction

FA preventable

by 35%

Thalassemic births by

50%

congenital rubella

congenital syphilis

Still birth surveillance in NBBD

To create a standard and reliable database on still births as part of NBBD : Indian Experience

Genesis of the study

NBBD captured all beyond 20 weeks.

Unaccounted ONES??

What was being missed?

<20 weeks

1st Trimester

2nd Trimester

CMF

199 169 132

PGIMER 1 YEAR DATA

Genesis of PVBD surveillance proforma

Fourth Meeting at Chandigarh (2014 ) & training workshop for pathologists

“Inclusion of Pre Viable birth defects surveillance”

Initially case control records with 2 normal pregnancies

•Plan of making it online submission

Methodology Screen all •USG at 16-18 week

Inclusion criteria • Cases All diagnosed BD <20 weeks •Controls –two for each case

Controls Antenatal clinic Management as per protocol

Cases MTP clinic Termination as per protocol Fetal autopsy, final diagnosis

Analysis Comparison of risk factors Autopsy correlation with ultrasound

Screened 11,280

CMF 428 Controls 771

RESULTS

Distribution according to maternal age

Distribution according to Gestation (in weeks)

Distribution according to FA intake during pregnancy

Distribution according to Preconceptional FA intake

Category CMF(N=452)

Previous History Of Birth Defects 22(4.8%)

Distribution according to previous history of birth defects

Distribution according to previous

history of birth defects

Pattern of BDs

GI defects(N=25)

GU defects(N=28)

Genetic defects & Others(N=36)

Autopsy

All

CM

F’s

sho

uld

be

su

bje

cted

to

au

top

sies

.

Ass

oci

ated

Mal

form

atio

ns

Gen

etic

co

un

selli

ng

acco

rdin

gly.

? ENCEPHALOCELE ? SPINA BIFIDA OCCULTA

OCCIPITAL MYELOCELE

HYDROCEPHALOUS

B/L MCDK

PD

DPM

Kidneys

PATHOLOGISTS’ WORD

• Meckle Gruber syndrome – AR

– B/L Multicystic dysplasia - Kidneys

– Ductal plate malformation – liver

– B/L hypoplastic lungs

– Neural Tube defects – Occipital meningocele, spinal meningomyelocele

– Hydrocephalous

– Polydactyly

Final Autopsy Diagnosis- Became

• Meckle Gruber syndrome

• From Encephalocoel to AR condition (5-25%)

• Genetic counselling, prognosis

From – Occipital encephalocele to AR

Challenges faced

Ascertaining the gestational age

• Induced termination of pregnancy for conditions like severe preeclampsia, previable PTPROM

WHERE TO LIST

Completeness of data

CHALLENGES FACED

Timeliness

•Reporting

•Filling

•Collection of forms

•Online submission

Accurate delineation and description OF CAUSE OF DEATH

CHALLENGES FACED Photographs:

Often Not taken

Poor quality

Placenta for Histopathology

Not sent

Infantogram

No consent

Autopsy

No consent

SOCIOCULTURAL ISSUES??

Preventable yet not???

SB/ NB/ Uterine scar

Severe Maternal morbidity, Preterm,

Resources/LOGISTICS

Overcoming Challenges

Standardization of SB proformas

Standard SOPs

Ensure Quality & Quantity

Sensitizing Pathologists

Way Forward

• Hospital based : Extend this NBBD surveillance to all facilities.Nodal centres, technical co-ordinators.

• Population based : Roll out at community level

• Online submission of PVBD forms

• Scale up already in pipeline by MOH, India.

Capacity Building

Integrated & Comprehensive

care

Changing the attitude

Way forward