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Care in New Zealand

» What usually happens when a baby is first diagnosed with CF?

When a baby is first diagnosed with CF, they are usually seen weekly until they they are growing normally or until their caregivers are confident with the enzyme giving and the physio.

Following a diagnosis, it is important that the baby’s family gets relevant information and education on how to care for them. The family learns about the giving of enzymes and trying to maintain good weight gains, twice daily physiotherapy and the importance of being seen regularly by health care professionals.

Not all babies with CF need enzymes to help them digest food. To find out if enzymes are required, a faecal fat test is done to determine whether the baby is producing sufficient enzymes themselves.

Newly diagnosed families are given a "Guide for Parents" booklet.

» Is genetic counselling and testing available for family members?

As CF is a genetic disorder, all newly diagnosed families are referred to the Genetic Services for genetic counselling. If required family members (including extended family members e.g. aunts, uncles, cousins etc,) are able to be screened for a CF gene via a simple blood test.

» What usually happens if a person with CF is admitted to hospital?

Children and adults with CF often have planned admissions. If they become unwell with increased cough and sputum, they are usually treated at home with oral antibiotics and with an increase in their normal twice daily physio sessions. The GP or the doctors at the hospital monitor them over the course of the oral antibiotic treatment. If the treatment is clearly not improving, then the patient is admitted to hospital for more intensive therapy. Often they will be reviewed at clinic and then be admitted on the same day or when it better suits the child or family.

Hospital treatments generally involve a two week course of IV therapy with intensive physiotherapy, a dietary review and a social worker review. Hospitalisation can be a time to look at all the treatments the patient may be having at home and reviewing each aspect.

» What happens at an Annual Review?

Once a year the children have an Annual Review. This normally coincides with their birthday month and is generally longer than a routine clinic visit as extra tests are scheduled. Patients are seen by the Doctor, the Dietician, the Physiotherapist and the Nurse Practitioner from the Child Liaison Team to discuss any emotional concerns. Checks are made on compressors and nebuliser bowls, spacers and asthma devices etc.

During the Annual Review, blood tests, a chest x-ray and sputum or throat swabs are usually done. If small children are having problems with the taking of blood tests or chest x-rays, your Nurse or Physician can arrange for the Play Therapists to assist the child. Play Therapists will generally see the child at an extra visit and it may take a few sessions until the child is able to go through with the procedures.

The Annual Review is a time for a general overview of the patient, for all members of the team and the parents. It is to make sure that the child is being adequately treated and growing well.

» Who sees people with CF in the regional areas?

There are paediatricians in every regional hospital in New Zealand who look after children with CF. Sometimes there is just one in a centre but sometimes all of the doctors have some CF patients each. Many of these doctors have been designated as Regional CF Paediatricians with responsibility for ensuring that babies detected by the new-born screening program have follow up clinical assessment and sweat testing to confirm or exclude diagnosis.

The regional CF paediatricians are: