[ St. Joseph's Hospital ]
SPECIAL BABIES
A guide for parents and families with Special Babies from birth to 2 years old
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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
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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
   Other Health Professionals


Other Health Professionals

You will meet many different health professionals when you have a special baby.  These people can answer many of your questions about your baby's care and progress.

Keep notes:

  • Some parents find it helpful to write down what each person says about their baby so they can discuss it with their doctors on the next visit.  Keep a record or log book from day one so all information is in one place.
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Who are the other health professionals you may meet?
  • Nurses
  • Physiotherapists
  • Occupational Therapists
  • Infant Development Workers and Infant-Parent Therapists
  • Speech and Language Pathologists
  • Respiratory Therapists
  • Psychometrists
  • Social Workers
For information on Doctors, click here.
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Nurses

Many different nurses may work with your baby:


  • Home Care Nurses - come to your home and physically look after your ill baby and teach you how to provide care

  • Clinic Nurses - look after your baby during clinic visits

  • Public Health Nurses - visit your home and help you find the community services you may need
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Home Care Nurses

If your baby requires nursing care at home, you will have a "home care" nurse.  He/she visits your baby for short periods daily or weekly in order to provide treatments like injections, tube feedings or suctioning.  They teach you how to provide these treatments so you can do them on your own.

The home care nurse may take care of your baby for a 4, 8 or 12 hour period.  This is called a "shift".  The nurse will care for your baby entirely, relieving you of this responsibility.

Your baby may need many hours of professional nursing care each week.  Other babies who are not as ill, may require only a few hours or one or two "shifts" each week.

Discuss with each nurse the exact type of care your baby needs.  If you are fortunate, the same nurse or nurses will come each time so that you, your baby, and the nurse(s) know each other.

Home care nurses know a lot about babies and can help you make decisions about your baby's health.

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Clinic Nurses

If your baby is attending a neonatal follow-up clinic, the clinic usually has a nurse who works there.  He/she can help you with health and development questions about your baby.  He/she can also help you get information about how to get help near your home.  In many cases, he/she can contact agencies or health professionals to set up a meeting for you to discuss your baby's needs.

The follow-up clinic nurse is also a great resource for information about other babies who have similar problems.  He/she may also have information on parent support groups for families with babies like yours.

Keep notes:

  • When you go to clinic, make a list of questions to ask the nurse.  Some parents say that writing down questions and the answers given helps them remember all the information they get on a visit.  This applies if you visit any kind of clinic for your baby - like orthopedic, cardiac, or neurology clinics.

When you can, take a friend with you to listen for you and take your notes.

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Public Health Nurses

Public health nurses are available in all communities throughout Ontario.  Public health nurses may not do direct nursing care but they teach people about health and do some health screening.  They also know a lot about agencies and services within your community.

The public health nurse can also help you if you have concerns about your baby's developmental progress.  He/she is aware of normal infant development and can help you decide if your concerns are real.

Some of the services your public health nurses offer could include:

  • developmental guidance
  • breast feeding support
  • home visiting
  • phone counselling
  • post-partum support groups
  • food and nutrition information
  • individual and family counselling
  • community services information
  • immunizations
  • parenting help

Make contact with a public health nurse very early in your baby's life.  Many times, this contact can be made while your baby is still in hospital.  If not, call and make an appointment.  He/she will make a visit to your home.

You can find the number for the public health nurse in the phone book.  Look in the blue municipal government pages under Public Health Department, Nursing Services.

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Physiotherapists (The Physio)

The physiotherapist works with your baby to improve how the muscles and joints work.  He/she checks your baby's muscle strength and tone and then designs a series of exercises to make the muscles and joints work best.  The physiotherapist will help you learn how to do these exercises at home between visits.

Your baby may have to see the physiotherapist often.  These visits are important to check your baby's progress and make needed changes in his/her care.  You see the physiotherapist in a hospital or clinic or he/she may come to your home.

The cost is usually covered by government health insurance if your doctor asked for the service.  A written prescription, requisition or referral may be needed.

Your doctor, the hospital, or clinics you visit can make a referral to a physiotherapist.

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Occupational Therapists (The O.T.)

The occupational therapist works with your baby to help him/her develop thinking and social skills.

Many special babies have delayed development in these areas because they were ill for such a long time at birth or because they have a condition which interferes with development.

The occupational therapist may teach you special skills that stimulate your baby.  These may include "games", showing your baby pictures or colours and talking with him/her often.  These techniques are also called "infant stimulation" and may be provided by other health professionals called "Infant Development Workers".  Research has shown that such babies benefit from therapy which teaches them these skills.

Ask your doctor about the need for infant stimulation for your baby if he/she does not suggest it.  If it is started as early as possible in a baby's life, the results are usually better.

If your baby was premature, this kind of therapy may help him/her to "catch up" in his/her development.

If your baby is physically sick - like with chronic lung disease or Congenital Heart Disease - he/she does not have a lot of energy.  Learning play skills that do not tire your baby can help you make the most of his/her "awake" time.

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Infant Development Workers and Infant-Parent Therapists

These health professionals have special training and a degree or diploma in fields related to child development.  They work with your baby to improve his/her general development.  They often work in Child Development centres and many offer home based services.

Ask your public health nurse, your clinic staff, or your doctor about these specialists and programs.

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Speech/Language Pathologists (Speech Therapists)

The speech/language pathologist works with children to try to develop communication skills.  These include listening, responding, babbling, talking and understanding gestures. They also work with babies who have problems feeding, swallowing and chewing.

Many special babies have problems learning to speak, pronouncing their words properly, or understanding words.

If your baby seems slow in his/her communication development, ask your doctor about speech therapy.

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Respiratory Therapists (The R.T.)

Respiratory Therapists are specialists who work with people who have breathing problems.

Many premature babies who required breathing support after birth have chronic lung disease and may need extra oxygen to breathe. If your baby is sent home with oxygen, you will need to find a respiratory company to handle your home oxygen and monitoring equipment.  The hospital will help you find a company in your area.

Once your are home, the respiratory therapist who works for the company will visit you at home to help you manage your baby's oxygen needs.  He/she may also test your baby's blood level of oxygen with an oxygen saturation monitor.

Respiratory Therapists are qualified to listen to your baby's chest and check his/her lung sounds.  He/she can tell you if your baby's condition has improved or is worse and can discuss your baby's condition with your doctor.

Keep the phone number of your respiratory company handy in case there are any problems with your baby's oxygen or monitoring equipment.

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Psychometrists

Psychometrists are specialists in child development and psychological assessment. They can identify specific strengths and weaknesses, the developmental age of your baby, and learning needs. They look at how your baby plays, solves problems and moves. The information you can provide and how well you describe what your baby is like is very important during this assessment.

Psychometrists may come to your home or see your baby in a hospital clinic. They use certain assessment tools and ask specific questions about how your baby is developing, what he/she can and cannot do, and what concerns you have about their development.

You may request a copy of the assessment report that includes recommendations for helping your baby.

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Social Workers

Social Workers are specialists who help families cope with emotional, social, behavioural and financial stresses.  They provide supportive counselling, crisis intervention and individual or family therapy.

Social Workers help families find and use community resources or programs.  They can teach parents how to become advocates for their special baby.  Your Social Worker may visit you at home or set up groups that offer you support and education.

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