KNOWING BUT NOT KNOWING - …

KNOWING BUT NOT KNOWING

Finding out about your baby's heart problem before your baby is born

Pregnancy is usually a time of excitement and anticipation plans and preparation hopes and dreams.

Now this precious time has been interrupted by concern about your baby's heart waiting for tests and information worry and anxiety.

Knowing but not knowing is experiencing uncertainty balancing concerns rethinking your dreams.

Modern health care can tell you much about your unborn baby, but the news is sometimes upsetting. By now you know about

your baby's heart problem.

Many parents have been where you are today. Some of their experiences are shared in this booklet.

KNOWING BUT NOT KNOWING Finding Out About Your Baby's Heart Problem Before Your Baby is Born

Knowing But Not Knowing is made possible through BC Children's Hospital Miracle Network Telethon Cardiac Sciences Program

Written in 1998 By Gwen Rempel RN MSN Laurie Cender RN MSN

Revised 2014 Jan Rooks RN BSN

Designed and Illustrated By Vicky Earle BSc AAM Biomedical Communications BC Children's Hospital Site University of British Columbia

Special Acknowledgments The parents who so vividly shared their experiences of antenatal heart problems for the benefit of others. The Cardiac Sciences Program at BC Children's Hospital The Perinatology Program at BC Women's Hospital and Health Centre Ellyn F. Donovan MSW PhD Cardiology Division of Children's Hospital of Pittsburgh for valuable manuscript feedback.

Additional copies available through: BC Children's Hospital Family Support and Resource Centre 4480 Oak Street Vancouver, BC V6H 3V4 Telephone: 604-453-8335 Email: fsrc@cw.bc.ca

TABLE OF CONTENTS

YOU ARE NOT ALONE1

"HITTING A BRICK WALL"2 Answering some commonly asked questions2

CHOICES AND DECISIONS7

Babies with mild or moderate heart problems

7

Babies with severe heart problems8

This is a lot of information9

TACKLING THE "BRICK WALL"10 Feeling the feelings10 Talk about your feelings12 Build on your strengths12 Inform your family and friends13 Build your support team13 Re-adjust your expectation14 Maintain a positive approach14

LOOKING AHEAD15 Some pregnancy-related questions15 "He cried!"16

SO WHERE ARE THINGS AT?18

DIRECTORY21

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