Surgery

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

(Page 3 of 3)

How do I know when it's time for my child to have surgery?

Dr. Hillel Laks: Timing of the surgery in the case of pediatric congenital heart defects is an important question. There are circumstances when surgery would be proposed even if the child has no symptoms. This is because the natural history of heart defects has been extensively documented in the past forty years, and it is often important to intervene before damage from the defect can occur. Generally speaking, nature has given the heart (and body) a large reserve of strength and energy to overcome many ailments. This reserve will diminish as the child grows and as the demand on a defective heart increases. There are other instances when surgery is required urgently because the child has severe symptoms. During the past fifteen to twenty years the trend has been to offer surgery to children at a younger age to prevent long-term damage to the heart from the defect. There are many centers that now treat newborns. Always question the indications for surgery at a very young age and ask what would happen if surgery were delayed for six months or for several years. There are other defects in which surgery isn't necessarily indicated for the newborn and may be timed more electively prior to the beginning of the school years.

ZACK'S STORY

By Zachary Weiss, age ten

When my mom and dad told me about the operation I was mad. Why did it have to happen to me?

During the days leading up to the surgery, I tried not to think about the operation. School took my mind off of it. When I tried to go to sleep, it was hard. Thinking about having it done was so out of this world. You think it can't happen to you then - boom - it happens.

The day of the operation was boring. I had to wait five hours for the surgery. The nurses were very nice. They gave me things to do and let me go to the playroom.

You don't know what will happen next. Then they call your name. I was so scared. I wouldn't go to the operating room.

I didn't want to know what would happen next. I wouldn't like down on the stretcher because I knew the next thing was the operation. They gave me a cocktail and I drifted off.

When I woke up my mom and dad were there. I was tied down, had IVs, couldn't talk, drink, eat - my mouth was dry.

My chest was so sore I couldn't feel it.

Every time they cleaned my ventilator our it made me cough and it really hurt - but luckily it didn't last very long.

The food was terrible. My chest hurt. I didn't want to use the pain management because it made me itch.

My mom told me if I didn't get up and start clearing my lungs, the doctors would clean them out with a needle.

They got you up early in the morning for blood tests. My arterial line hurt when it came out.

The day I got out of the hospital it was hard walking to the car. Then it was hard sitting in the car.

I was starving.

I was home.

The Hospital Stay

TIPS FOR THE HOSPITAL STAY

"Realistically, parents will have a hard time taking care of themselves during this time. You have to keep eating sensibly, and take something with you to occupy your time. If there is a sibling at home, you're torn apart there because they miss you and want everyone home again at the same time. Spouses have to take turns staying at the hospital and then going home to other children. This is hard because while you're away (from the hospital) you're worried about changes, and while you're at the hospital you're worried about the children at home."

- Sharon Popp, mom to Ben (pulmonary atresia with VSD and transposition of the aorta)

"We had bought special books and a special easel to use in bed and favorite animals/toys. The Mylar balloons were great, too. Take your camera - use it and keep a journal of your whole experience."

- Sheryl Lamb, mom to Heather (double outlet right ventricle, hypoplastic right upper chamber, transposition, subvalvular pulmonary stenosis, bilateral superior vena cava with interrupted inferior vena cava, common ventricle)

"While in the NICU and PICU, I found it was helpful to read her chart and be part of what was going on, doing as much baby care as possible, and being informed about her medical care. And rocking, rocking, rocking my baby as much as possible."

- Laura Murphy, mom to Amanda (hypertrophic cardiomyopathy and Noonan's syndrome)

Life After Surgery

Brian just got a skateboard for his fourth birthday. He rides his bike and can hit a baseball over the house and hang from the monkey bars. When the doctor saw him the other day he said, 'There's my superman. All he needs is his cape.'"

- Laura Ulaszek, mom to Brian (HLHS)

Are there any special camps for children with CHD? What are the benefits of these camps?

Dr. Michael Landzberg: Depending on the time of year, newspapers and the internet are filled with advertisements for summer camps that either incorporate or are "designed" for children and adolescents with "special needs." Summer fun and accomplishments with similarly aged children allow for growth, independence, self-worth, and sense of community, and are benefits in whatever venue they are offered. The experiences of campers are nearly universally felt to be excellent, though long-term results are unknown, as the camps are relatively new in existence. Scholarships are frequently available.

"The very best thing about camp was that I got to be with other kids who are just like me. They made me feel really good because it's like we're all in the same world and we all know just how each other feels. It's a lot harder to be with kids who aren't like me because they make me feel really different. They say 'What are those?' about the scars on my chest, and what I always say is 'See ya tomorrow, I'll tell ya then!' I get so tired of kids staring and asking me questions. But at camp I could just be me; I didn't even cover up my scars when I went swimming! No one made fun of anyone else. No one stared. That's because at camp, every kid has something wrong with him. Every single one of us."

- Gavin Dehler, eleven years old (Orlando, Florida, Boggy Creek Hole in the Wall Gang camper)

Now that I've had one baby with CHD, am I at higher risk for another one?

Dr. Woodrow Benson: Yes, the recurrence risk is increased. The general population risk is about 1 percent (1 in 100). If you have one baby with CHD, the risk increases to approximately 2 percent (2 in 100). The risk for a parent with CHD to have an affected offspring increases to 3 percent. If two family members are affected (parent or sibling), the risk increases to 10 percent. If there are more than two affected family members, the recurrence risk is 50 percent (even chance).

Growing Up

Are there any special needs or concerns that a pregnant woman with CHD should be aware of?

Dr. Michael Landzberg: From its onset, pregnancy induces hormonal changes that promote water retention, abnormal changes in heart rate, filling and pumping ability, increase in extra abnormal heartbeats (arrhythmia tendency), increase in breathing pattern and inefficiency, musculoskeletal instability, change in potential iron balance and blood counts, and abnormal breakdown and use of previously stable medications. All of these factors contribute to increased fatigue and may lead to increased risk for individuals. Being pregnant with twins (or more) may exaggerate these changes. Means of delivery (vaginal vs. cesarean) should be based on the needs of the mother and doctor, with intense planning and discussion beforehand and also a readiness to alter the planned approach if needed. Women who have holes in their heart need filters placed on their IVs to eliminate the possibility of an air bubble reaching the brain or other vital organs. Similarly, women with cyanosis may require oxygen during pregnancy or delivery.

Treatment of mothers who use anticoagulants ("blood thinners") before, during and after pregnancy is intense and carries particular risks. Pregnancy carries it's own tendency to promote clotting, and types and doses of medications taken to protect mother from development of valve dysfunction, stroke or blood clots may change at varying times during pregnancy. Frequent follow-up is essential.

"I look at other mothers and I wonder what it would be like to just worry about the silly things."

-Pam Rogers, mom to Hannah (AV canal)

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.