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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
   Special Babies Have "Special Needs"

Babies who have "special needs"

A "special baby" needs more help from others, more health care and services than other babies normally need.

All special babies have problems.  Most require health or other government services to help the parents meet the babies' needs and care for them at home.

Special babies have problems that could have resulted from an illness, underdevelopment, genetic traits, an accident, or an unknown cause.

As a parent of a special baby, you want to learn what you can do so your baby will be able to do all he/she can do in the future.

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What problems might "special babies" have?

breathing problems - babies may need oxygen, suctioning, or a tracheostomy tube to keep them breathing.  Others may need respiratory monitors to alert parents.

feeding problems - some babies cannot suck, swallow or keep food down and need to be fed with tubes or through an intravenous line.  Others need special diets or positions to correct problems.

heart problems - there are many heart and blood diseases that need special equipment like a cardiac monitor and special drugs.

bowel problems - some babies need constant help for constipation and others have bowel diseases that need surgery like a colostomy.

muscle problems - some babies have muscles that have too much tone or too little.  These problems may limit moving.

vision and hearing problems - some babies are blind, have limited vision, or cannot focus; others cannot hear sounds or voices.

developmental problems - some babies may not develop the ability to sit up, roll over, reach out, crawl or walk at the age that most other babies do.  They may no smile and socialize with others, recognize their parents or learn to talk at the usual age.  These babies may need special exercises to help them strengthen muscles and practice movement for future development.

premature problems - babies who are born very early and who spend many weeks or months in a Neonatal Intensive Care Unit or Special Care Nursery often need extra care when they come home from the hospital.&nbps; Sometimes they have health problems which require treatments for months, years or life.

gene and chromosome problems - some babies are born with an abnormal number of chromosomes, or they may be arranged in the wrong order. Other babies may have an abnormality on one gene, which is a part of a chromosome.  These conditions may lead to a developmental delay or a specific physical problem such as seizures or eating problems.

terminal illness - some babies are born with problems that cannot be treated and some may die very soon.  If death is expected soon after birth, the baby will probably stay in the hospital.  If the baby is expected to live for weeks or months, parents often want to have their baby at home for the time he/she is with them.  Many parents say that this is a very rewarding experience.

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When do "special babies" develop their problems?

Some babies develop problems even before they are born.  Some problems develop at the time or shortly after birth.  Some babies may be born too soon (premature) or too small and they do not have the ability to manage without special help.  Disease, accidents, or genes may have caused other problems.

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How do I know if my baby has "special needs"?

You know if your baby has a "diagnosis" or "label" that describes the many problems they have.  Examples are "Down Syndrome", "Cerebral Palsy", or "Congenital Heart Disease".  There are many other diagnoses also.

A health professional, usually your doctor, will have talked to you about the problems and the care your baby needs.  You may not feel ready to deal with all these problems.  You and your baby need support from others.

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What if my baby does not have a "diagnosis" or "label" but I think something is wrong or "just not right"?

Some babies have special needs that do not get noticed or "diagnosed" or "labelled" for quite a while.  Parents may feel that their baby is "not quite right".  They have trouble solving their baby's problems but they cannot get a health professional to agree that problems exist.

Some parents are advised that the problems will go away in time, and indeed some do.

You need advice and guidance while your baby is developing and growing.

Some problems are very real and need early attention.  If you are a parent who thinks your baby has "special needs" but you cannot find someone to listen to you, you may feel frustrated and helpless.  Go to the section Describing Your Baby.  Here is some practical advice for how to describe your baby's problems in ways that help the health care professionals listen to you.

Trust your instincts as a parent.  You will know when something is wrong.  Keep searching for answers.  Continue to talk to others about your baby and get the support your special baby needs.

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How long do the problems last?

Some problems may be quite serious but will only last a few months or years.  Others are chronic and last a lifetime.

Some babies have problems that will result in their death after a few weeks or months.  Many of these babies can live at home during their short life.  Parents may need extra help during this sad time.

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How do parents look after "special babies"?

Often, parents need the help of many other people and services to look after their special baby.  Parents, brothers, sisters, and other family members learn how to manage their baby's problems.

Some babies may need treatments, care or equipment that only professionals can deliver.  These professionals may come to your home to provide the care.  You may take your baby to hospitals, clinics, or other centres to get treatments or care.

You become the advocate for your baby...  you must speak on his/her behalf.  You must be confident.  You must be positive.  You will learn to be assertive and very capable.

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Special babies with "Labels"

In the past, terms like "handicapped", "disabled","mentally retarded", or "developmentally handicapped" were used to describe some babies with special needs.

Another way to describe special needs is with medical words used for diagnoses, like Cerebral Palsy, Down Syndrome, Hearing Impairment, or Congenital Heart Disease.

When these terms and diagnoses are used, they can exclude or stop some babies from getting services or programs they need because the baby does not have the right kind of "label".  On the other hand, the labels can also help your baby get many services they do need.

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A word about "labels"

Sometimes, in order to qualify for or get a service, you will be asked what is wrong with your baby.  Certain agencies have been set up to deal with babies who have a certain "diagnosis" such as Cerebral Palsy, a physical handicap, or those who have a certain "label" such as mentally handicapped or hearing impaired.

The problem here is that some babies without "labels" may have trouble getting services.

Be aware that many people, both parents and professionals, feel that labels may actually limit a baby's access to services.  This is because the label is too restrictive.  The baby may have many problems, and the "label" may not reflect the many needs the baby has.

If you and your doctors have decided on the label which best describes your baby's condition, by all means use it when talking with agencies.  It may help people understand the special needs your baby has.

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