en POLSKI
eISSN: 2544-2538
ISSN: 2450-8624
Pielęgniarstwo w Opiece Długoterminowej / Long-Term Care Nursing
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1/2021
vol. 6
 
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abstract:
Original paper

Caring for a child with Haddad’s Syndrome

Iwona Klisowska
1
,
Mariola Seń
1
,
Jadwiga Staniszewska
1
,
Agnieszka Lintowska
1
,
Barbara Grabowska
1
,
Anna Kowalska
2
,
Luba Jakubowska
1

1.
Zakład Promocji Zdrowia, Uniwersytet Medyczny im. Piastów Śląskich we Wrocławiu, Polska
2.
FortMedica, Medyczne Centrum Rodzinne NFZ, Polska
Online publish date: 2021/05/04
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Aim
In Haddad Syndrome the congenital central hypoventilation syndrome (CCHS) and Hirschsprung disease occur concurrently. It is characterised by sleep apnea and colon defect. Its symptoms are inconsistent and they affect numerous organs. Most characteristic one is the inability to breathe independently during sleep. Congenital central hypoventilation syndrome most often occur right after birth and is caused by abnormalities in the brain which fails to send the impulse to initiate diaphragm contractions and thus to start breathing. Birth incidence of the syndrome is 1 in 200,000 live-births. Few hundred people are diagnosed across the world, and only several of them live in Poland.The aim of this work was to present patient’s diagnostic, therapeutic and nursing problems and the scope of education for parents of a child with Haddad Syndrome

Material and methods
This study was completed by the use of case studies, patient care process, medical documentation analysis, observation, interviews with parents about nursing problems and child’s quality of life.

Results
Haddad Syndrome is a rare disease. Primary aims of therapeutic team were to secure child from hypoventilation, to prevent malnutrition and infections caused by injections, the use of urinary catheter, tracheostomy tube or stoma.

Conclusions
Main nursing problems for a child were: respiratory failure, risk of infections and problems of stoma care. The next essential element of the nursing process was education of parents which were to be prepared for a difficult and specific care of an ill child.

keywords:

nursing, child, care, Haddad Syndrome

 
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