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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
   Doctors


Doctors

Doctors are health care professionals who can diagnose and treat your baby's medical problems.  Some doctors are family doctors who know how to treat general diseases and injuries that any family member may have.

Many doctors are specialists for specific types of illnesses or specific types of people.

  • A paediatrician specializes in children.
  • A neonatologist specializes in premature or very ill newborns.

    It is important for parents to find a doctor that understands your baby and his/her special needs.  It is just as important to find a doctor you can easily talk to.  You will be working with your doctor often in order to plan your baby's care and progress.


  • 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.

    Your doctor will also be helping you make decisions about many treatments your baby might need.  In Canada, most of the health care services you use are started by having a doctor approve them for you.  Sometimes this is called a doctor's order, a prescription or a referral.

    Your relationship with your doctor is the most important one you will have in the whole health care system.  You and your doctor need to be on the same team and working for the same results.

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    How to find a doctor

    You will need to find a primary care doctor to look after your baby's total needs.  This doctor will give the immunizations, arrange for needed referrals and look after minor illnesses and emergencies.  This can be your regular family doctor (also called a general practitioner) or your baby's paediatrician.

    You can have your doctor refer you to another doctor.

    You can contact the Academy of Medicine for names of doctors taking new patients as well as some basic information -- language(s) spoken, male/female, location, and if they visit in the home.  Look them up in the yellow pages of your phone book under Physicians and Surgeons: Academy of Medicine.

    If your baby was cared for in a Neonatal Intensive Care Nursery or in a Special Care Nursery, the paediatrician or neonatologist may be able to continue caring for your baby.  If that doctor does not have a private practice, or you live too far away, ask for a referral to a specialist in your area.

    Another source is the nurses in the hospital or birthing centre where your baby was born.  They usually have a list of available doctors.  Ask them to suggest one or more doctors who have cared for other babies who had problems or special needs like your baby has.

    You can ask friends or relatives to recommend a doctor or describe their own experiences.  If you know any health professionals personally, you can ask them how you get the right kind of help.  They may advise you on who you should contact and how to make that contact in the fastest and easiest way.

    Another source is a support group for parents of babies who have problems like yours. These groups can be located by looking for the resources that help people with a specific "diagnosis" or "label".  There are support groups for Cerebral Palsy, Cleft Lip and Palate, Down Syndrome, Heart and Stroke, Arthritis, Cancer, and SOFT (Support of Families with Trisomies) to name a few.  These parents will know who is available to look after your baby.

    There are many associations that can help you.  Look in the yellow pages under Social Service Organizations.  Some associations are listed with information about what kind of help they can offer.

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    Building your relationship with your doctor

    Once you find a doctor, make an appointment to discuss your baby.  Ask what hospital he/she sends patients to.  You will want to know how close it is to your home, what the visiting rules are, and whether or not you can stay with your baby if he/she has to stay there.

    Talk to your doctor about your baby.  Discuss your worries, the special needs right now and ask what you might expect in the future.  Ask the doctor about other specialists you might need to see and who he/she refers patients to.

    Keep notes:

    • Keep a written list of questions to take to the doctor.  This way you will not forget to ask about anything that concerns you.
    • Ask the doctor for written information about your baby's condition.
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    What if your doctor is not helpful?

    Some parents find that they do not get along very well with their doctor.  There are many reasons for this.  The doctor may not answer your questions thoroughly or may use words you do not understand.  You may not agree with the therapy the doctor recommends for your baby.  Perhaps you feel your worries are being brushed off or the doctor appears "too busy" to give your baby the care you think he/she needs.  You might feel the doctor does not have the expertise or "know how" to care for your baby's special needs.

    Before you change doctors, try talking to your doctor.  Explain why you are feeling unhappy.  Your doctor may be able to change the way he/she talks to you or give you more information, or more choices.

    If for any reason you feel that the doctor is not the right one for you and your baby, you may switch to another doctor.  Once you have switched, you may ask that your baby's records be sent to the new doctor.  There may be a charge for copying the records.

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    What is a "second opinion"?

    The "second opinion" is a common phrase in health care.  It means that another health professional has reviewed the situation and has offered their opinion about the problem or treatment.  Now you have two people to advise you.  In some cases, the two people agree on the problem and treatment.  In other cases, they may give you two different choices and let you know what could happen with each one.  The second opinion is really useful when you have to make major decisions.

    You may want a second opinion if you disagree with your doctor or if you need further information.  You can ask your doctor to arrange for a second doctor's appointment.  If he/she will not arrange a second opinion or suggests you can do this yourself, go ahead.  Your doctor can give you the names of appropriate doctors or you can call the Academy of Medicine or the local hospital and ask for the name of a doctor who has experience with babies like yours.  The Children's Hospital for your region is another place you may call, even if it is far from you.  They will know the specialists in your area.

    After you have visited the second doctor, go back to your doctor and discuss the other visit.  This may improve your relationship with your doctor and help you make decisions that are right for your baby and your family.

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    What if you feel awkward about questioning a doctor?

    If you have never questioned a doctor or other health professional before, or asked for a second opinion, or switched to another care giver, you may worry about doing this.  Your fears are normal but you should go ahead.  Remember that you are learning to care for your baby's special needs.  You have to find the people who you can work with very well.  There are different styles of practice, different methods of treatment, and different ways to solve problems.


    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.

    Try to decide what will work best for you and your family. If you think your baby's needs are not being met, you are probably right and you must do whatever you can to help.


    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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    Working with your doctor

    You have to work together with your doctor to help your baby.  You can make special arrangements about what treatments will and will not be done and how other doctors will be involved.

    When you clarify your expectations on important issues you are helping to choose the right doctor for your baby.


    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 in the future.

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    When your baby needs many doctors

    Your baby may have many doctors because he/she has many needs.

    There may be a doctor to look after breathing problems, one that checks vision or hearing, and another for feeding problems.  Your baby may be looked after in a follow?up clinic or other specialty clinic where many specialists will see him/her on one day.

    Keep notes:

    • If you do have many doctors, make sure you keep a record of their names, what each one does for your baby, results of any tests, when your next appointments are and the office phone numbers in case you need to reach them between appointments.
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    Summary

    • You need doctors who understand your baby's special needs and who can talk to you in ways you understand.

    • You need a primary care doctor who can look after the general health of your special baby.  This can be your family doctor or pediatrician who gives immunizations, looks after childhood illnesses, and can be there for the easy emergencies.  You need to make sure that this primary care doctor gets copies of tests, visits, and any reports about your baby from other specialists.

    • You may need one or more specialists who can look after the special needs your baby has.  You need to be able to build a good working relationship with these doctors so you can work together as a team.

    • You need to be brave enough to act on behalf of your baby.  If you need help to be brave, there are lots of other health care services and support groups to help you.  See Other Health Professionals.

    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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