The Diagnosis

The Parent's Guide to Children's Congenital Heart Defects: What They Are, How to Treat Them, How to Cope With Them
by Gerri Freid Kramer, Shari Maurer

If you have a child with a congenital heart defect (CHD), you have a million questions: How did this happen? What kind of surgery is best? What's life going to be like for my child after surgery? Will problems crop up later? Will the crisis ever end? In The Parent's Guide to Children's Congenital Heart Defects, more than thirty leading experts in pediatric cardiology - cardiologists, surgeons, nurses, nutritionists, counselors, and social workers - give detailed answers in plain language to help you learn to live with your child's CHD.

Written by two parents of children with CHD in an easy-to-follow question-and-answer format, this guide brims with the latest information on diagnosis, treatment options, surgery, aftercare, and growing up with CHD, along with the voices of dozens of other parents who have lived through CHD and know what you're going through. In these pages, you'll find the information, empathy, and support you need to care for your child and thrive together.

When someone held a stethoscope up to each of our tiny newborns' miraculously beating chests and told us there was a problem, a certain amount of innocence and trust was shattered and forever lost. For both of us, it was as if the planets suddenly went out of alignment.

We had met and socialized in college years before, but we didn't keep in touch or send each other birth announcements after we left. Years later, thanks to a mutual friend, we reconnected. We weren't in the same physical community any longer. Unfortunately we were part of a new community, this one made up of parents all over the world who had a child with a congenital heart defect.

Everyone who enters parenthood is forced to suddenly "grow up," but learning your child has a defect - what a terrible word - adds an especially heavy measure of responsibility. It's frightening and overwhelming but may ultimately be strengthening.

Not knowing what lay ahead and finding no books about CHD were particularly challenging for us. Technical articles and medical textbooks didn't speak to us. Thankfully, we had each other to call, and some extremely kind, competent physicians.

After both Lissie and Max had surgery, we continued to keep in touch. As we've found, a "repair" doesn't really give you a ticket out of the CHD community. Concerns persist, be they warranted or completely silly, and it's reassuring to be able to talk to someone about them.

Six years later, one thing we can say is thank goodness for E-mail. We can connect at any time of the day or night, and help each other while carrying on with "normal" life. After all, Lissie and Max's lives - and ours with them - are as ordinary and extraordinary as we like them to be.

Somewhere in our correspondence, the idea for this book was born.

The Diagnosis

Lissie was five days old when she was diagnosed as having a heart defect. We were in the hospital treating her for jaundice and the pediatrician, noticing a murmur, referred her to a cardiologist to see what might be wrong. Everyone in the room had such somber looks on their faces, I knew it must be serious, but a voice in my head kept saying, "What's the big deal about a murmur - you hear about people living with murmurs their whole lives. Why is everyone so worried?" The cardiologist who came to see us kindly reassured us that Lissie would be fine. I later understood that she meant that with surgery she would be fine. Shari

What is a Doppler echocardiogram? How does it work? Why is it needed? Does it hurt? Will my child need sedation?

Dr. Thomas Graham: A Doppler echocardiogram, or "echo," as many people call it, is a special test that uses sound waves and computer processing to record a picture of your heart. It's very similar to the sonogram that you may have had while you were pregnant. It's used to learn about how well the heart pumps; the presence of any defects such as valves that don't open or are too leaky; and the size, shape and thickness of the heart chambers. Your child will need to lie on the table, and a jellylike substance will be spread on his or her chest and tummy. The jelly improves the conduction of the sound waves from the ultrasound, giving a clearer picture. The doctor or technician then uses a small probe, which he or she rubs on the jelly. This doesn't hurt; it may just feel a little cold. Your child must lie still for the entire test, which generally takes a half hour to forty-five minutes. Many centers use videos and other forms of distraction (see "Tips for Echos and EKGs"), but in rare situations they will use sedation to make a child groggy and more receptive to the test.

TIPS FOR ECHOS AND EKGS

(selections)

"Use bubbles, sucker, and their favorite video or TV show. Some people even practice echos at home with an old computer mouse and some Vaseline"

- Susie DeLoach, mom to Joey (HLHS)

"As a young baby, when Alex was inconsolable during echos, the technicians let me cradle him in my arms or on my lap. That usually helped because it reassured him that as long as he had his mom or dad, then everything was okay, no matter what weird things they were doing on his chest."

- Sara Daniel, mom to Alex (tricuspid atresia, ASD, VSD)

Will my child reach his developmental milestones on time?

Dr. Amnon Rosenthal: Most children born with heart disease will grow and develop normally. Some variability in reaching milestones is to be expected among children, and significan delay may occur in some children with serious heart disease. Development among infants and children with heart disease depends on the type of heart defect or disease and often on the presence of other associated health problems such as intrauterine growth retardation, prematurity, major anomalies in other body systems or genetic disorders. Children with congestive heart failure or cyanotic heart problems usually walk and talk one to four months later than other children. Over the past few decades, the outlook for the child with congenital heart disease has greatly improved because surgical repair is performed at an early age. Improvements have been made in operative techniques and anesthesia for children, and there has been considerable development of dedicated postoperative cardiac intensive care units. All these advances should result in improved developmental outcomes for children.

Copyright © 2001 by Gerri Freid Kramer and Shari Maurer. Excerpted by permission of Three Rivers Press, a division of Random House, Inc. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

About the Author

Gerri Freid Kramer is the mother of Max, age 6, who was born with CHD.

Shari Maurer is the mother of Elisabeth, age 7, who also has CHD.