Children's Cardiomyopathy Foundation



Medical Care

If your child is admitted due to complications from cardiomyopathy, he/she may be in the intensive care unit (ICU). Specially trained doctors, dedicated nurses and technicians will tend to your child around the clock. Your child's blood pressure, heart rate, and respiratory rate will also be monitored continuously for any abnormalities. When you see your child, you may find him/her sedated or very drowsy with various equipment and tubes hooked to him/her. Some of the special equipment may include a breathing machine (ventilators), chest tubes to drain blood or fluid from the chest after an operation, and several intravenous lines to give blood, fluid and medications.

Once your child's condition stabilizes, he/she will be moved to the pediatric care unit. Your child's doctor will advise you on whether your child requires more specialized treatment at another medical center. Depending on your child's condition, certain criteria such as the availability of transplantation, ECMO, cardiac surgical support, pediatric ICU, neuromuscular specialists, geneticists, or physicians who specialize in pediatric cardiomyopathy will determine whether a medical center can provide the full range of needed services.

Comforting Your Child

Due to the circumstances that your child was admitted to the hospital, your child may or may not realize what is going on. He/She may be disoriented or scared. You can make your child feel more at ease with familiar objects (i.e. blankets, toys, books, music) that you bring from home. At some point, you will need to explain what has happened and what to expect in terms of medical procedures and treatment. The guidelines for when and what to tell your child are the same as described in the Preparations Before a Scheduled Procedure section.

When your child is in intensive care (ICU), your primary job is to make your child as comfortable as possible. During the day, ask the nurse whether you can hold your child even though he/she may be attached to tubes. Continue to talk and touch your child so that they are aware of your presence. When it comes to staying overnight with your child most ICU nurses will advise anxious parents to get a good night's sleep at home. It is better to take advantage of the ICU's constant care and save your energy for the pediatric ward where there will be fewer nurses attending to your child. Also, if your child is sedated or on a ventilator, there is very little that you can do for them during the night.