It is devastating for any parent to discover a child has a disease such as cystic fibrosis, and cystic fibrosis care for your newborn is essential to offer support to you as parents when the illness is discovered. Ongoing support is crucial as cystic fibrosis is a debilitating disease and one which can lead to early mortality.
Cystic Fibrosis: How it Affects the Sufferer
Cystic fibrosis (CF) is a chronic and gradually debilitating disease which significantly affects the breathing and digestion processes of those who suffer. Despite being an inherited disease caused by a faulty gene, in the newborn or young infant, it can be a difficult disease to diagnose in those children who suffer frequent coughs, colds and chest infections and who may struggle to thrive and gain weight in early life. These symptoms are likely because of the thick and sticky mucous that builds up in the gut and the respiratory system making breathing and the digestion of food extremely difficult.
For a new parent, cystic fibrosis care for your newborn will need to be carefully structured as levels of care are high and the child may be extremely dependent. Education for new parents with a sick child is essential as the risk of infection and other associated problems with the illness are high. With correct knowledge, parents will be able to detect such things early, to enable prompt treatment.
Victims of the disease often spend much of their life, particularly in the diagnostic stages, in the hospital undergoing tests and other treatments. Living with a child with CF is a lifelong commitment, and the twenty four hour delivery of care required from parents can be extremely challenging. It is a sad fact that the average life expectancy of a person with cystic fibrosis is only 31 years of age. Fortunately if diagnosis is sought early, then treatment can begin quickly, and life expectancy is likely to increase.
Cystic Fibrosis: Care for Your Newborn by Experts
The support and care in hospitals may help parents cope with the stress and difficulties associated with caring for a child with CF, and for many, offers them a period of respite for a brief time simply because care in the home can be intense and stressful. Not only does the newborn suffer the unpleasant effects of the illness, but parents go through painful times watching their precious child suffer.
Fortunately for those with cystic fibrosis, a multi-disciplinary approach to care is followed enabling treatment to be offered on various levels. Specialist treatments involve:
Physiotherapy
Due to the frequent build up of mucous on the lungs and the digestive tract, it is necessary for a CF patient to have physiotherapy up to several times per day, particularly when a respiratory infection is present. Treatment given by a qualified expert will enable the mucous to drain from the affected areas, and this can offer immense relief. Once a parent becomes more accepting and confident about caring for their sick child, basic physiotherapy techniques will be taught to enable prompt delivery of care when the newborn most needs it. This care can be carried out at home without the need for frequent hospital trips or home visits from the therapist. Physiotherapy is one of the most important care elements in those suffering CF.
Nutritional Support
Nutritional and dietary attention is paramount, especially in the newborn. Infants are fragile and due to vulnerable immune systems are more prone to infection, so the maintenance of a good intake of milk, whether it be bottle or breast milk, is crucial to ensure the infant gains acceptable and healthy amounts of weight. Nutritional advice and monitoring will be delivered by a qualified dietician, and as well as caring for the needs of the newborn, parents will be able to discuss worries and concerns without feeling isolated.
Exercise
Although this is not entirely relevant to a newborn with CF, parents will be encouraged to allow their infant to be mobile on a regular basis. The use of rocker chairs and bouncers are useful aids to mobility particularly in infants that are unable to mobilize themselves. This, therefore, can be classed as a form of exercise as it encourages regular drainage of unwanted mucous build-up in the body.
Medication
Due to the affects on the lungs, cystic fibrosis care for your newborn will involve administration of regular medications. The use of antibiotics when infection is present is something parents become familiar with, and also the ongoing use of 'bronchodilator' drugs is beneficial to open up the airways and encourage adequate oxygen flow. In situations where breathing becomes hazardous to health due to compromised airways, the newborn may require steroids to counteract this problem.
For the gastrointestinal problems, the newborn is unlikely to require the common enzyme treatments. They will however once they begin eating solid foods. Nutritional and vitamin supplements may be given to enhance absorption of milk.
Oxygen Therapy
Infants with CF may require supplementary oxygen therapy from time to time. This can be given at home as well as in the hospital. When the lungs are particularly 'sticky', the flow of oxygen to the lungs is restricted, and additional oxygen ensures that the child does not come to more harm as a result of this.
Gaining Support
The above care services are offered to parents of newborn's with cystic fibrosis as standard. It is however equally important that parents are able to access help for themselves, and counseling is often a good way of ensuring that the parents are adequately supported. To see a child so small and helpless going through a roller-coaster medical journey can be frightening, and counseling can help with the acceptance and ongoing coping abilities.
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