from www.babyheartspress.com/hlhs
Once you are home you must make decisions about how your child will be cared for. Ideally, either the mother or the father will stay home with the child. Daycare facilities represent a higher risk of infection than home care. Certain diseases can be life-threatening, especially for transplant babies. RSV (respiratory syncitial virus) is one such infection. While dangerous for any newborn baby to contract, it is even more dangerous for a baby with a heart condition and could be life-threatening. In older children and adults RSV simply acts like a cold. Another virus especially dangerous for transplant babies is CMV (cytomegalovirus) which also presents itself as an ordinary cold in children and adults.
In order to protect your baby from infections there are some simple things you can do:
-avoid day care settings
-don’t smoke or allow anyone to smoke near your baby
-don’t take your baby out in crowded settings especially if in an enclosed space (such as stores, small restaurants, etc.)
-don’t take your baby to places where many young children will be (that even includes church nurseries)
-don’t take your baby where you know someone is sick and don’t let sick people in your home
-don’t be afraid to ask (or tell) people not to touch your baby (nobody should touch your baby without first washing hands) and wash hands often (yours, baby’s and family members).
It is especially important to wash hands after using the bathroom or changing diapers. Some doctors recommend that heart transplant babies should not have pets or houseplants.
That was a big list of don’ts. Here are some do’s:
-do treat your child as normally as possible
-do visit with relatives and friends, especially outdoors or in open spaces when everyone is well (limit the number of visitors at a time)
-do kiss your baby (not on the mouth or if you are sick), love your baby and have fun
-if you must go out to a restaurant or some place where someone sneezes or coughs, move or ask to be moved to another place away from that person
-do keep your baby up to date on immunizations - childhood diseases are much more dangerous to your baby (heart transplant babies cannot have live virus vaccinations)
-get a special bracelet or anklet for your child to wear indicating that the baby has HLHS or is a heart transplant patient and list the medications the baby takes and
-do have a positive attitude - that alone goes far in developing a healthy person.
One other thing you may want to do is to contact the nearest Fire Station and/or paramedics in order to inform them that your baby has a heart condition and may require emergency treatment or resuscitation.
Your baby will probably require some kind of medication (most commonly Lasix and digoxin for Norwood babies) and possibly some kind of equipment - whether it be some kind of monitor, feeding device or portable oxygen. Make sure you feel comfortable administering the medicines and using any equipment. Get a phone number of somebody to call in case you develop a problem or have a question. The nurses will be happy to help you learn how to care for your baby before you leave the hospital. Your baby may also need some kind of therapy (speech, physical or occupational) to help promote normal growth or to reteach certain skills. The hospital social worker can help you identify programs right for your child.
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