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Help for new parents of babies with CF: Part 1 of 2

Becoming a parent is life-changing and raising kids already comes with its own ups and downs. Throw a chronic illness into the mix, and things get a lot more challenging.

Armed with knowledge, tools, a great medical team and a supportive community, parents of CF babies often find that they can adapt, and rise to the challenges that come their way. In addition to funding life-enriching research, Cystic Fibrosis Canada endeavours to help parents give their children the best possible start.


FIND YOUR TEAM

You don’t need to go it alone. Here are the key players whose expertise will help you at every turn:

The clinic
There are 42 CF clinics in Canada, providing specialized care for 4,100 patients. Find your nearest clinic.

The physician
Often your CF care team will be comprised of several physicians, who will rotate in seeing each patient in clinic. The physicians will make all CF medical decisions in consultation with the team, prescribe required medications, and lead the team in care provided.

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The nurse
This is your main contact when health issues arise, the nurse will see each patient and their family during a clinic visit and often visit them if there is a hospital admission.

The physiotherapist and respiratory therapist
The physiotherapist will teach you how to perform various airway clearance techniques (chest physiotherapy), and perform these treatments when admission to hospital is necessary.

The respiratory therapist is responsible for helping with your child’s nebulizers, compressors, and all other equipment you may need for your child’s treatments.

The dietitian
The dietitian will review your child’s diet, and give advice about providing your child with the right foods to gain and maintain weight. The dietitian will also teach patients about the use of enzymes and when to take them.

The social worker
The social worker helps assist in the search for community resources such as financial assistance, tax credits and educational opportunities. They also provide emotional support and guidance when needed.

The pharmacist
The pharmacist supplies CF medication and is available to explain the purpose of each drug, the dosage and best routine for giving each medication.

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FIND YOUR TOOLS

When facing a difficult diagnosis, it can be empowering to arm oneself with knowledge and research. We’ve published extensive material on every aspect of CF life. Check out our main resources here and here.

These pieces are especially helpful for parents of newly-diagnosed babies:

  1. Your Child and Cystic Fibrosis
  2. Preventing Dehydration in CF Babies
  3. Nutrition, CF and the Newly Diagnosed Infant

Another great resource is Happy Heart Families, a website that has a section devoted to Tools + Tips for CF Parents.

Finally, AboutKidsHealth is a website developed by SickKids to help patients and their families better understand diseases like CF.


FIND YOUR COMMUNITY

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