Children's Cardiomyopathy Foundation



Meeting Your Child's Emotional Needs

During the hospital stay, your child will turn to you for the emotional support that only a parent can provide. All children, regardless of age, worry about separation from their parents. Feelings of loneliness or of being abandoned in a strange place are what distress children the most. At these times, you should emphasize how important it is to their health to be treated by the doctors at the hospital.

Even though your child may not say so or act like it, he/she will need reassurance of your presence. Young children under the age of 5 need a parent or somebody familiar to stay with them at all times (unless they are sedated in the intensive care unit). Your involvement in their care will help your child maintain his/her daily schedule while retaining some degree of normalcy. Older children need daily visits by somebody familiar to them. They also need to be encouraged to talk about their experience and feelings. During the times you are unable to stay with your child, give your child something to hold onto until you return. Assure them that the separation will only be temporary and that the nurses and doctors will take care of them while you are away.

Comforting Your Child

When your child's condition improves, he/she will be moved from intensive care (ICU) to the pediatric care unit where you can take a more active role in your child's care. The nurses generally encourage parents to bath, change and feed their child because a familiar face makes them feel more at ease. If you are unsure of how to do something because of bandages and tubes, ask the nurse to show you how the first time. Find out where the hospital supplies are so that you can help yourself to necessary supplies when needed (blankets, sheets, bottles, nipples, formula). Of course, you should always check with the nurse on any major decisions related to feeding, removing bandages, stopping medications or moving your child.

There are a several methods for keeping your child comfortable while he/she is recovering. Some nurses will roll up a dense foam pad and insert it under the mattress to prop the bed up to a 45 degree angle. They may insert rolled up blankets under your child's legs to prevent him/her from sliding down or at the sides under their bed sheet to allow your child to elevate his/her arms slightly. For children that have been in the hospital for more than 3 days, they may develop sore muscles from the inability to move around. Turning your child from side to side every few hours or gently moving his/her limbs will help with the circulation. A gentle massage after a sponge bath may also make your child feel more comfortable. A child with congestive heart failure may have some fluid build up around the heart and lungs that can lead to breathing problems. The nurse can teach you how to perform chest physical therapy (using small cups to gently pound on the chest and back) to loosen the mucous in the lungs. Children usually find this very relaxing and may even fall asleep while you do it.

Over time, your child will need less pain-relieving medications and the doctor will encourage him/her to be more active. You can request sessions with a physical or occupational therapist if your child has been in the hospital for an extended period or if you have any concerns about his/her developmental skills. As long as your child can tolerate it, encourage your child to engage in familiar play and to do simple exercises in bed (i.e. throwing, kicking, rolling, reaching). Most hospitals have an activity center where you can borrow toys and books to play with your child. Younger children can also engage in pretend play (i.e. taking Teddy's temperature, giving dolls an injection, playing with cars) or work on manipulative pieces (i.e. puzzles, play-doh, blocks, activity boxes). Older kids can work on arts and crafts projects or write/draw about their experiences and feelings. If your child is well enough, you can take him/her for a ride in a wheelchair or stroller to the hospital's children library or activity center for a change of scenery. All these activities help your child make sense of their surroundings and remind them of familiar activities from school or home.

Feeding Your Child

If your baby is hospitalized after breastfeeding has been established, you will need to pump at the hospital and at home to maintain your milk supply. You should pump based on his/her normal feeding schedule and more often if you need to increase your supply. Most hospitals have breast pumps for use in the maternity ward and freezers to store your breast milk. When your baby is well enough to drink, you can ask the nurse to feed your baby expressed milk by the bottle or feeding tube if he/she still cannot nurse.

For children who are eating solid food and have regained their strength, you can check with the cardiologist and nutritionist on whether he/she needs a special diet and inquire about when you can feed your child's favorite foods from home. Familiar food may encourage your child to eat more and feel more secure. If you do decide to bring prepared food from home, a refrigerator and microwave are usually available on each floor, and dietary service can provide extra utensils and bowls.

Working With Health Professionals

While your child is in the hospital, you will meet many different health professionals. At times, it may seem like an endless round of visits from cardiologists and possibly electrophysiologists, geneticists, nutritionist and occupational, physical and feeding therapists. If your child is in intensive care, there may also be ventilator technicians and other pediatric specialists (surgeons, neurologists, gastroenterologist) visiting. In addition, there are daily rounds with attending unit doctors, fellows and residents to discuss your child's case.

The hospital staff is there to help your child get well but at the same time you should be aware that they handle many patients. You will therefore need to be an effective advocate for your child's medical care. You are the best person to interpret his/her needs and wants, and determine whether something seems out of the ordinary. This is one reason why you should be available during the day when the doctors make their patient rounds. It is the best time to update doctors on your child's condition and bring up any concerns you may have. There are some basic tips to keep in mind when dealing with various health professionals:

  • Be clear and to the point when asking questions. Think ahead and make a list of questions and concerns and have them in front of you when you speak to doctors.
  • Write down the answers and keep them in a folder or notebook for easy reference. Writing things down, especially in stressful times, make it easier to remember later.
  • If there is some aspect of your child's treatment that bothers you, discuss it with your doctor or get the nurse to leave a note for the doctor in the patient care book. Don't be afraid to speak up when you feel you are not getting the attention or help that your child needs. The best approach is to be firm and straightforward while remaining calm and pleasant in your requests.
  • Get to know the nursing staff by name and agree on the sharing of your child's care on a daily basis. Inform them of what comforts and upsets your child in case you need to be away.
  • Report your observations or recap the major day's issues with each new nurse that comes on shift. Although each nurse will brief the next nurse on shift, it's always good to reemphasize what you feel are the key issues to be addressed for your child.
  • If you leave for any length of time, tell the shift nurse where you be and when you plan to return. If you cannot make it back in time, phone the ward and let them know of your new arrangement.
Getting Necessary Support

When your child is in the hospital, it is a stressful and emotional time for everyone. If your child is chronically ill and has been in the hospital frequently or for an extended period, it can become especially physically and emotionally draining for you and the whole family. It is important to remain calm and ask for the support that you need before stress begins to wear you down. Here are some practical tips on getting the necessary support while your child is recovering.

  • Space visits from relations or friends so that they can provide relief or companionship for you. Arranging "shifts" with your child will allow you to go home to rest or take care of household issues. Although you may fell guilty leaving your child, remember that everyone needs a break at some point. You will probably have more energy once you have a change of scenery even if it is merely a walk outside the hospital or taking a break in the cafeteria.
  • Ask for specific help from friends and relatives such as watching your other children during the day, bringing over a home-cooked meal on a specific day or running errands on certain days of the week. In many cases, people want to help but need to be told exactly how.
  • Take some time out each day to talk with your spouse and occasionally do something for yourself whether it's reading the newspaper, taking a long bath or getting a massage. During stressful times, it is easy to forget to take care of your own needs and feelings.
  • If your child has a scheduled hospital visit, try to make all necessary domestic arrangements ahead of time so that you can completely focus on tending to your child at the hospital. Work out a plan with your spouse as to who will be responsible for various care and home duties. Hire outside help if you can.
  • If you have other children at home, enlist the help of relatives (grandparents, aunts, uncles) to provide the extra attention and emotional support that siblings may need at this vulnerable time. You should also reserve a certain amount of time each day with them so that they do not feel neglected.
  • If the situation gets overwhelming, get input from others (families, nurses, therapists, a chaplain, a social worker, support groups) on how to deal with your child during this stressful period. All hospitals have chaplain services and a social worker available to work with families. It may be comforting if there is someone to share your feelings with on a regular basis.