Ventilator-Assisted Living©

Fall 2001, Vol. 15, No. 3

ISSN 1066-534X

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Read selected articles from this issue ...

The Polish National Center for Home Mechanical Ventilation in Children
Merek Migdal, MD, PhD, and Tadeusz Szreter, MD, PhD, DSc, Warsaw, Poland

Sheila Kun, RN, MS, Children's Hospital Los Angeles, California

Pediatric Noninvasive Ventilation
Lisa Bylander, RRT; Sue Port, MSN, CRNP; Elspeth Jardine; Georgiana M. Sanders, MD; Jim Ripka, RRT; Aroonwan Preutthipan, MD; Judith Green-Latner, RN, MSN, FNP; Catherine Lockwood, RN

German Pediatric Masks
Uwe Mellis, MD

David Jayne Goes to Washington: HR 1490 Is Introduced

Post-Polio Swallowing, and Cough

Risks: Tribute to Barbara Waxman Fiduccia, disability advocate
Rick Santina

MRI-Compatible Ventilator

Potpourri: GINI Research Fund Call for Proposals; HCFA Changes Name;
IVUN Resource Directory online; Travel Websites

The Polish National Center for Home Mechanical Ventilation in Children

Marek Migdal, MD, PhD, Professor and Consultant in Pediatric Intensive Care Unit, and Tadeusz Szreter, MD, PhD, DSc, Head of the Department of Anesthesiology and Intensive Care, The Children's Memorial Health Institute, Warsaw, Poland

The Polish National Center for Home Mechanical Ventilation in Children was established in June 2000 as a common project of the Polish Ministry of Health and the Department of Anesthesiology and Intensive Care of the Children's Memorial Health Institute (CMHI) in Warsaw. The aim of the project was to collect epidemiological data on chronic respiratory failure in children in Poland, to improve the survival and quality of life in ventilator-dependent children, and to evaluate medical, psychological, and economic outcomes of long-term home ventilation in the Polish pediatric population.

The CMHI is a pediatric tertiary center specialized mainly in cardiology and cardiosurgery, transplantation (livers and kidneys), neurology and neurosurgery, endocrinology, metabolic disorders, and rehabilitation. In our 10-bed PICU, we treat approximately 300 children each year.

Until the middle of the '90s, all children with chronic respiratory failure had to remain in our PICU on ventilation for months, even years. In 1995 we started to treat at home using Puritan Bennett's Companion 2801® ventilator on two ventilator-dependent boys. In 1998 we started to use another method – the implantation of the phrenic nerve stimulator. Until now, five children have been treated using phrenic nerve pacing; two are still alive.

Our first scientific publications on the national level and mass media reports about children suffering chronic respiratory failure caused a lot of demand for home treatment from parents and other PICUs. Thus, in June 2000, the Polish Ministry of Health decided to begin a project of home mechanical ventilation in children with a budget sufficient for 11 ventilators.

During the first four months of the project, 36 requests from regional PICUs were received. All of them met our main inclusion criteria: known final diagnosis, stable clinical state, tracheostomy, ventilator-dependent longer than six months, and readiness of parents for home care. The causes of chronic respiratory failure were mainly spinal muscular atrophy, diseases or injuries of the spinal cord, or congenital muscular dystrophies. The duration of previous mechanical ventilation varied from 7 to 36 months.

The order for the ventilators was completed during September 2000, after selection of the BREAS PV 401 ventilator. The first patient, a 2-year-old girl with spinal muscular atrophy, was admitted to our PICU two weeks later. The multidisciplinary team (physicians, nurses, respiratory therapists, and psychologist) were involved in the assessment of the parents' ability to perform home care.

While in our PICU, each child is ventilated using the BREAS ventilator in the PCV mode. Parents are trained in chest physiotherapy, suctioning, tracheostomy tube change, cardiopulmonary resuscitation, and use and maintenance of the ventilator as well as additional equipment such as pulse oximeter, mobile suction unit, and Ambu bag. Duration of hospitalization in our PICU needed for the child's observation and parents' training varies from 5 to 14 days.

Before discharge home, signed and informed parental consents, as well as agreements with the regional PICU for emergency admissions, are collected. Upon discharge, the children return directly to their homes (up to 500 km away from Warsaw) or are transferred back to regional PICUs.

Among 14 children already enrolled in the project, 10 are currently at home, two died at home, and two are waiting for ventilators at regional PICUs. Children who are at home are under the care of family doctors, however, we visit them every three to six months. First results confirmed that home ventilation is safe and effective.

The need for antibiotic use because of respiratory tract infections has been significantly reduced (less than one treatment per child during the last six months). None of the children released home have had to be readmitted to the hospital.

Current major problems are slow progress, financial problems of parents, and lack of clear national regulations. Slow progress is mainly due to the high number of acute cases in our PICU. Delayed discharge home is linked to the financial problems of parents. Only the home ventilator is provided by the CMHI, and additional equipment must be purchased by parents or charity funds. Funds for disposable supplies needed for the home care are refunded by only a few of 17 independent regional funds.

Despite all of these problems, we expect that home care for ventilator-dependent children will continue to grow in Poland. Using the additional funds from the Ministry of Health as well as from private sponsors, we plan to increase the number on home ventilation during 2001 to 20 children. We hope that through our project all of them will be safely and effectively managed at home for a long period.

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