The Parent's Guide to Children's Congenital Heart Defects:|
What they are, how to treat them, how to cope with
Gerri Freid Kramer and Shari Maurer
Three Rivers Press
New York, NY
At long last, a practical and useful resource for families coping with a
child who has CHD. This easy to read book uses personal stories and a question
and answer format on a wide range of medical and daily living issues.
The Parent's Guide to Children's Congenital Heart Defects is a truly helpful
resource, especially for families new to the experience of raising a child with
Starting a Conversation: School Children With Congenital Heart Disease
Jillian Roberts and Sheryl MacMath
Detselig Enterprises Ltd.
June 14, 2006
If improved communication with the people who spend six
hours a day or more with your child is your goal, this book can be a valuable
tool. Through a thorough review of the different types of heart defects and the
voices of a parent, teacher and child, it opens the doors for an honest
conversation of concerns and fears. It ends by discussing the best ways to
The book is divided into three sections. The first
discusses living with congenital heart defects (CHD). It mentions the dichotomy
that so many heart patients and families face: the quest for normalcy while
taking necessary precautions. The authors discuss the internal issues children
with CHD deal with, such as facing their mortality at a young age. The anxiety
that parents feel can also affect their children, so it is important that
parents address their own concerns.
In the second section of the book, a child, parent and
teacher discuss their experiences in the classroom. These people are not
connected to each other, so the situations they discuss are completely different
experiences. Common themes emerge: the child wanted to be like other children;
Mom stressed the seriousness of her child's condition, but then realized the
teacher was overwhelmed and panicked; the teacher felt the parent was
downplaying the seriousness of her child's problem so he would be treated
normally. The teachers in this section were so stressed by the anxiety of
something going wrong with these vulnerable children entrusted to their care
that they questioned whether they should stay in the teaching profession. The
distress experienced by the child, parent and teacher highlight the need for
detailed dialogue to occur.
The final section explains how to facilitate this
discussion, through "The Five C's of Best Practice: Competence, Communication,
Consistency, Confidentiality and Compassion." The importance of each topic is
analyzed, with a "checklist" for teachers and parents to complete to ensure the
best environment for the child. If steps like these are followed, the teachers
should feel confident, the parents shouldn't experience overwhelming anxiety,
and the child, knowing this partnership is in place, should be able to
concentrate on the important matter at hand - learning.
This book has many nice small touches, such as pictures
drawn by children with CHD which express their feelings. A detailed list of
references at the end tells educators and parents the research that has been
done in this area.
This book promotes better communication. Teachers and
parents who follow "The Five C's of Best Practice" should have improved
dialogue. The book succeeds in this goal, to the benefit of parents, teachers
and children with CHD.
Review by: Monica Farrell
||Growing Up Strong: What Every Parent|
Should Know about Self-Concept in
Children with Long-Term Illnesses*****
R.L. Bryan Company
Sale Price: $10.00 (Price includes shipping)
Written by a pediatric nurse from the perspective of a mother of a child with chronic illness, Mary Burkett's book provides practical and very useful information for parents. Based on the premise that our children's medical conditions can impact their social, scholastic and behavioral skills, as well as their concept of self, Mary presents numerous strategies to help parents raise confident and well-adjusted young people. Issues such as effective and honest communication, allowing children to make choices whenever possible with regard to their medical care, handling school issues and social pressures are frankly discussed. Using her child and family as an example, Mary leads us through various stages of development, and the easy to understand yet frank and honest language makes this a most effective and valuable resource.
Growing Up Strong is a "must read" for families and health professionals as well.
Click here to order!
- Brothers, Sisters, and Special Needs: Information and Activities for Helping Young Siblings of Children with Chronic Illness and Developmental Disabilities ****
- by Debra J. Lobato
- Paul H. Brooks Publishing Co., 1990
- ISBN: 1-55766-043-3
The first section deals with the unique needs of siblings of children with special needs. A review of normative sibling relationships is followed by an informative presentation of issues unique to brothers and sisters of chronically ill or developmentally delayed children. Topics include talking to your children about the child's disease/disability, the psychological adjustment of brothers and sisters, and the impact on the family.
The second section focuses on the development and implementation of programs and workshops for siblings. Intended for professionals, the author has included detailed descriptions of specific workshops and activities appropriate for young children.
- Your Child in the Hospital: A Practical Guide for Parents *****
- by: Nancy Keene and Rachel Prentice
- OReilly & Associates, 1997
- ISBN: 1-56592-346-4
This book offers a truly practical guide for parents facing the hospitalization of their child. Sections include preparation, the hospitalization, and returning to family life for all types of hospital stays. In addition to the text of the book, the chapters include excerpts from interviews with over 40 families about hospitalizations and their "expert" advice.
The actual hospital environment is covered in depth, including very clear descriptions of the facilities, staff, common procedures, surgery, pain management and communication with the care team. In addition, the issues of keeping medical records, insurance, billing, and financial help are addressed. The middle chapters of the book provide advice on how to tell family and friends, how to support a family of a hospitalized child, and how to help siblings.
I read this book after my daughter had been hospitalized four times. I found it to be very accurate and helpful. It is very readable and will help parents become more effective advocates for their children during hospital stays. While the entire book is excellent, the many quotes from expert parents were especially comforting for me. These parents provide insights and advice for a hospital stay that can not be found elsewhere.
This is an excellent book for parents and families facing a hospitalization. This book will aid parents in remaining calm, easing the childs fears, and becoming an advocate and team member in the medical care.
Review by: Julie Kozel
||Pump the Bear *****
Gisella Olivo Whittington
Illustrations by Joseph Crisalli
Brown Books, 2000
Sale Price: $12.00 (Price includes shipping)
A beautiful story book about little Pump, a baby bear born with a congenital heart defect. The story answers Pump's questions about his heart as his loving family explains what makes Pump so special. With an emphasis on positive thinking and a healthy lifestyle, Pump the Bear is a wonderful story book for young children.
||Blue Lewis and Sasha The Great
Carol Donsky Newell
Illustrations by Betty Grisham
Cally Press, 2005
Sale Price: $8.00 (includes shipping)
An adorable story about a little boy who has a "hole in his heart".
He is often left out of childhood games because he does not have the energy to
participate, and is sometimes lonely and sad. His parents buy him a puppy that he
names Sasha. Sasha, with all the mischief and playfulness you'd expect from a
little puppy, makes Lewis feel great and makes him popular with the children in
his neighborhood. Lewis has an operation to "fix" his heart, and is
soon running and playing with Sasha and his friends.
This beautifully illustrated read-aloud story book is sure to please children
and parents alike!
In a Heartbeat: A Baby's Heart, A Surgeon's Hands,
A Life of Miracles
As a forty-six year old survivor of a complex congenital
heart defect, Kimberly Russell shares her inspiring story about growing up with
a congenital heart defect. In 1960 she is diagnosed at the age of two weeks with
a single-left ventricle. The cardiologists said there was nothing they could do,
because Kim was too small and too young for surgery. "We are not sending her
home to die," the surgeon explained to her distressed parents. "We are giving
her time to grow so that she has better chance of surviving the surgery." Watch
the story unfold, as Kim beats the odds In Heartbeat: A Baby's Heart, A
Surgeon's Hands, A Life of Miracles.
Will Dream New Dreams*****
- Stanley D. Klein, Ph.D. and Kim Schive
- Kensington Publishing Corp., 2001
- ISBN: 1-57566560-3
This masterfully edited collection of personal stories written by parents of children with disabilities and special health care needs provides hope, encouragement, and positive strategies for coping with every day life. Each entry is short and to the point, very positive in nature, and honestly portrays the thoughts, fears, and feelings so common among us.
While I have to admit that I find large collections of personal stories somewhat repetitive and bogged down with medical or technical information, I totally enjoyed reading You Will Dream New Dreams, and recommend it for any parent new to the experience of having a child with special needs.
- Future Conditional
- by, Jo Hatton
- Yorkshire Art Circus, School Lane, Glasshoughton,
- Castleford, England
- ISBN: 1-898311-16-1
Joe Hatton is the longest surviving recipient of a heart lung transplant. Born with holes in her heart, she developed Eisenmengers Syndrome. This book tells Joes story of growing up with Congenital Heart Disease, and the problems she faced. It also describes coming to terms with the need for a heart lung transplant, and the transplant its self. In this book Joe describes both the technical issues of transplantation and the emotional issues, such as coming the terms with someone else dying, and learning to live a new life after the transplant.
I have read other books on peoples' heart transplants, and seen films about transplants. This is the first book, by a person with congenital heart disease, describing their experience. Due to this, I found this book particularly interesting. I found I could relate to some of the issues described in it.
Review: by Antony Horner
- Kara Mia ****
- by Maryann Anglim & Walter Allan, M.D.
- Seahorse Press, Bath, ME
- ISBN 0-9656501-0-3
Kara Mia is the true story of a young teenager who suffers cardiac arrest and anoxic brain injury while at track practice. She was subsequently diagnosed with Long QT Syndrome, a genetic electrical heart disorder that can cause heart arrythmias, syncope and sudden death in apparently healthy young people.
The book is written from the perspective of Kara's mom, who is also a nurse, and her daughter's physician. Kara Mia is very readable to a non-medical audience and is complete with a glossary.
The struggle they endure during the on- going rehabilitative process will make you cry and sometimes laugh, as you share in the emotion and strength of family and community throughout Kara's recovery.
This book is an excellent resource for understanding Long QT Syndrome.
Review by: Gayle Harvey-Daley
- Advice to Doctors and Other Big People from Kids *****
- by Gerald Jampolsky, M.D.
- Celestial Arts, 1991
- ISBN: 0890876185
There have been many books writen by physicians, nurses and other members of the health professions about ways of working with children and their health problems.
This book is different. It is written by children.
Sometimes we adults become so busy with our day-to-day responsibilities that we don't take time out to listen with patience to what be in the minds and hearts of the children we touch.
The purpose of this book is to give kids an opportunity to be heard, to offer their suggestions and to express some of their feelings to the doctors, nurses and other health care workers who are helping them with their healing. We hope, too, that it will help the adult reader to listen to the innocent child within.
* The above is reprinted with permission from the Center for Attitudinal Healing
- Building the Healing Partnership: Parents, Professionals, & Children with Chronic Illnesses and Disabilities ****
- by Patricia Taner Leff and Elaine H. Walizer
- Brookline Books, 1992
- ISBN: 0-914797-60-3
The authors attempt to bridge the gap between parents and medical professionals through the extensive use of narratives and personal experiences. Chapters include the diagnostic process, grief and coping strategies, family dynamics, and ongoing care. The result is a wonderful book that fosters mutual respect and helps to develop skills for enhancing communication among the partners involved in the care of children with special health needs. Recommended for families and health care professionals
- Going to the Hospital
By Anne Civardi and Stephen Cartwright
EDC Publishing, 1995
This is a light-hearted, friendly story of a family, with one child
going to the hospital. The colorful illustrations provide children an
opportunity to look at and talk about different hospital situations. The books
illustrations include many people in each picture, demonstrating the busyness
of a hospital. It provides a short phrase version on the top of each page for
younger children and text of a few sentences on the bottom of each page for
children with a longer attention span.
- Review by: Tina Chan
- Cardiac Kids: A book for families who have a child with heart disease
by Vicci Elder, Illustrated by Annie King
Dayton Area Heart and Cancer Association, 1994
This is a story written about a family with a child who has a serious heart
condition. Using the voice of an older sister, the story does a good job of
explaining how things are viewed from the older sibling's point of view. It
explains many of the tests a child will experience after being diagnosed with
heart disease. The author, a mother and counselor, has included a note for
parents. It is one of the few books that provides illustrations of
children getting an electrocardiogram (ECG), and an echocardiogram or echo. It
also talks about a cardiac cath lab.
- Review by: Tina Chan
- Elmo Goes to the Doctor
A Jellybean Book sesame street
by Sarah Albee
Illustrated by Tom Brannon
Sesame workshop copyright 2001
The world of Sesame Street is in vivid color in this book. Elmo's mommy takes
him to the pediatrician for a routine check up. It's colorful pictures grab
children's attention. A good book to discuss a regular check up with a child,
from waiting in the waiting room, to checking height, weight, blood pressure,
checking eyes, ears, tummy, and the oh-so-dreaded shot. Elmo learns you can go
to the doctor if you are not feeling well, and she can help you feel better.
- Review by: Tina Chan
- Franklin goes to the Hospital
by Paulette Bourgeois and Brenda Clark
The cartoon turtle Franklin has something wrong with his stomach and has to go
to the hospital. This book really addresses how Franklin feels, and addresses
being scared and worried about hospital procedures. The story travels from
discovering his illness at home, finding out he needs surgery, talking to his
friends about how he feels, learning its ok to feel worried about procedures
like x-rays, discussing the operating room, and being a brave patient.
- Review by: Tina Chan
- Mr. Rogers' Neighborhood: Going to the Hospital
by Fred Rogers
A Paperstar First Experiences book
The Putnam & Grosset Group, 1988
Ok, the clothing and hairdos are a little outdated. Nevertheless, Mr.
Rogers does an excellent job telling the story of what happens to a child when
they have to go to the hospital, be admitted, and stay the night for a
procedure. The book shows real photos of common things a child might
experience. He uses a warm and reassuring style that helps explain what is
going to happen at the hospital.
- Review by: Tina Chan
- The Hospital: A Talk-About Book
By Debbie Bailey
Photos by Susan Huszar
Firefly books Ltd.,
As written by the author: Through simple text and engaging photographs, The
Hospital explores a variety of basic procedures that a young child might
experience in a hospital setting. A child and adult explore and discuss the
images they see, we hope that each young reader will feel more comfortable
should they ever become a patient in a hospital.
Comment: This book is really good to help young ones understand what
happens at the hospital. It provides a good discussion starter regarding
things like blood draws, x-rays, and the best part...going home! This is a
board book, very appropriate for young children.
- Review by: TIna Chan
- The Hospital Book ****
- by James Howe
- Beech Tree Books, 1994
An excellent resource for children age 4 and over. Topics include: general information about the hospital environment, descriptions of hospital personnel and their various duties, routine tests and procedures, the operating room, etc. Many black and white photographs are included, and present a realistic view of what the child is likely to experience.
- Young People and Chronic Illness: True Stories, Help and Hope ****
- by: Kelly Huegel
- Free Spirit Publishing, 1998
- ISBN: 1575420414
Written by Kelly Huegel, this book presents inspirational chapters based upon interviews of young people growing up with various chronic illnesses, including a chapter on Congenital Heart Disease by Seth Barmash.
In part 2, Kelly reviews useful strategies for developing positive relationships with health professionals, explains the benefits of participation in support groups, and provides listings of useful resources for several different diseases and conditions.
- When Molly Was In The Hospital : A Book for Brothers and Sisters of Hospitalized Children *****
- by Debbie Duncan, Illustrations by Nina Ollikainen
- M.D. Rayve Productions Inc., Windsor, CA, 1994
- ISBN : 1-877810-44-4
This beautifully illustrated story book centers around the experience of a young girl who's sister becomes ill and is hospitalized for surgery. The child's feelings and the family's experience are honestly and realistically portrayed throughout the events of the sibling's illness, hospitalization, and recovery. Recommended for ages 5-10.
Through the powerful use of photographic imagery and personal narratives, Max
Gerber gives us an as yet unseen glimpse into the hearts and minds of children
and young adults who are growing up with Congenital Heart Defects. The
hauntingly beautiful photography accurately portrays the thought provoking
reality of their experience.
Highly recommended reading for parents, adult patients, and medical professionals!>
Review by: Mona Barmash
King of Hearts: The True Story of the Maverick Who Pioneered Open Heart Surgery *****
by G. Wayne Miller
Random House, 1999
I received a review copy of King of Hearts a few days after my son's last operation for Congenital Heart Defects, and I have to admit, the LAST thing I wanted to read about was open heart surgery! Much to my surprise, I was quickly engaged in this masterfully told story about Dr. Walt Lillehei. I was also struck by the bravery of parents who, by allowing new procedures to be tried on their children, laid the groundwork for the medical advances that keep our loved ones alive today.
Highly recommended reading for parents, adult patients, and medical professionals!
Review by: Mona Barmash
Pediatric Heart Surgery: A Ready Reference for Professionals
L. Eliot May, PA-C
Pediatric Heart Surgery is a beautifully illustrated guide of congenital heart defects. Defects and repairs are listed alphabetically for easy reference, and each defect/repair is consistently divided into 3 sections: pathophysiology, surgical technique and postoperative considerations.
The book is very technically oriented with special detail given to an overview of surgical technique. Postoperative considerations are fairly general, although some repairs are covered in greater depth than others. The diagrams are helpful in illustrating the repair and various suture lines. A diagram of the normal heart and defect accompanies each section for easy comparison. Although post-operative blood flow is diagramed, consistent labeling of the various patches, conduits, shunts, etc., would better illustrate the before and after anatomy and enhance the written text. In addition, even though this book was intended to serve as a basic reference, some knowledge of the field is required to understand the concepts and abbreviations used. The reader should also keep in mind that the surgical techniques and postoperative considerations are specific to the experience of the author and his institution, and thus may not reflect current practice at other institutions. Additional reading is therefore essential for professionals to fully understand the repair, goals of treatment, expected parameters, and specific interventions.
Review by: Elizabeth Tong, MS, RN, FAAN