[ St. Joseph's Hospital ]
A guide for parents and families with Special Babies from birth to 2 years old
Special Babies Have "Special Needs"
Describing Your Baby
Other Health Professionals
Caring for Special Babies at Home
Daily Living with your Special Baby
Services for Special Babies
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Introduction Special Babies Have "Special Needs" Describing Your Baby Doctors Other Health Professionals Hospitals Caring for Special Babies at Home Daily Living with your Special Baby Services for Special Babies The St.Joseph's Hospital Community Resource Manual
   Caring for Special Babies at Home

How to get health services in your home

Some sick and special babies can be looked after at home instead of in a hospital.  Many health care services can be provided in your home.

When home care begins, someone may come to your home or visit with you while your baby is still in hospital to see what you need.  This person is called an intake worker, a coordinator, a nurse, a supervisor, or even by a different name, depending in what part of the country you live.

During this visit, be sure to carefully explain the care that your baby needs.  Not all workers or nurses are familiar with babies like yours.

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Government services

The Ministry of Health provides health care services at home for people who would otherwise need to be in hospital.

Services at home may include professional care, equipment, supplies, homemaking, information and easy access to other agencies or groups.

Look for the number for the Community Care Access Centre (formerly called Home Care) in your area for what is available and how to receive the service you may need.  You may need a health professional referral for some services.  Your provincial health insurance pays for these services.

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Private services

Home care services are also available from private companies.  Your private and extended insurance plans may cover the cost of these services.  Each insurance plan is different.  Some have a maximum amount to pay out for nursing or other types of care each year.  You will have to check this with your insurance company.

Private agencies charge an hourly rate which is comparable to the salary of the kind of professional or support person you need.  Your doctor may need to fill out the forms stating that such care is required.

To get information about these private agencies, look in the yellow pages of your phone book under "nurses" or "home health services".

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Nursing care at home

Nurses can come to your home to look after your baby.  They can take over the complete care of your baby for many hours at a time.  This will let you be away from your baby so you can rest, sleep or do other things. 

Nurses can do many things for your baby.  Some examples are:

  • giving drugs by needles or tubes
  • preparing and giving special feedings by tubes or bottles
  • using suction equipment or special positions to keep the air passages clear
  • changing complex bandages
  • watching for problems and acting fast
  • cuddling and talking to your baby
  • answering many of your questions.

Nurses can come from government funded programs arranged by your doctor or from private nursing or home care programs arranged by you.  Doctors usually provide medical orders or treatment plans.

Here are a few suggestions that other parents find helpful:

  • when arranging for a nurse, be sure to ask for an experienced neonatal or paediatric nurse to care for your baby

  • have the nurse call you to discuss the baby's care before coming

  • when the nurse comes to your home for the first time, spend time with him/her to make sure he/she understands your baby's care and how to use any equipment

  • request that the same nurse(s) returns each time.  If a different nurse is sent each time, you will have to explain your baby's care over and over again.  Many parents report that a small core group of nurses that are continually assigned to one baby works best

  • have written instructions for your baby's care.  These instructions should cover routine care and what to do in an emergency.  Provide your doctor's phone number

  • if you are out of the home when the nurse is caring for your baby, make sure you can be reached at all times

  • set careful guidelines about her/his use of the telephone, T.V., kitchen etc.

  • do not expect the nurse to do anything else but care for your baby.  The nurse will not care for other children (unless previously arranged) or do housework except that directly related to the baby's care like preparing food, or tidying the crib

  • if a nurse does not care for your child the way you would like, discuss your concerns with the nurse and ask her/him to change.  If no changes occur, talk to the supervisor and request a different nurse.  Also, if a nurse takes particularly good care of your child or seems to "fit in" with your family better, you can request that he/she returns.

      Once you qualify for home services or private nursing, usually you can use the allotted hours whichever way you wish.  You may wish to use them during the day so you can work or care for your other children.  You may wish to use them at night so you can sleep.  Occasionally you may wish to group them together so that you can have a few days off for a vacation.  Arrange the schedule with the supervisor of nursing.
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Therapy and treatments in your home

Therapists can come to your home to give your baby treatments, exercises, check his/her progress, and help the family learn how to provide care.

Physiotherapists, Occupational Therapists, Infant Development Therapists, Respiratory Therapists and Speech Language Pathologists may come to your home to help your baby.

  • Physiotherapists help the muscles and joints.  They come to the home when your baby needs special exercises to develop muscles, keep joints moving, and prevent later problems.

  • Occupational Therapists help develop fine motor, thinking and social skills.  They come to your home when your baby needs help developing because his/her illness or condition is delaying progress.  The exercises they do and teach parents to do will help some babies catch up and others to develop to the best of their ability.

  • Infant Development Workers or Infant-Parent Therapists are specially trained in child development and work with babies who are delayed in their development.  You may live in an area where these workers are available for home care.

  • Respiratory Therapists work with babies who have breathing problems.  Some special babies need oxygen or other breathing equipment at home.  These professionals can set up the equipment, teach you or other care providers how to use it, and can check your baby to see if his/her breathing has changed.

  • Speech Language Pathologists teach the family how to develop your baby's communication skills and can help with chewing, swallowing and feeding problems.
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Having "outsiders" in your home

If you dislike the thought of "outsiders" in your home helping care for your baby, at least give it a try.  Many parents who avoid getting help become totally stressed out and exhausted and their baby must be admitted to hospital to give them a break.  They wish they had agreed to give home services a try right after discharge from hospital.

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