Critically Ill
Newborns Require
Special Treatment

| would like to share some
thoughts with you about a group
of youngsters who are ventilator
dependent. These are infants with
chronic lung disease. By and large
when you hear neonatologists
talking about chronic lung disease,
we are talking about broncho-
pulmonary displasia (BPD). We be-
lieve this is a laterogenic disease
that results from the use of high
concentrations of oxygen and from
trauma to the lungs caused by ven-
tilation. Regardless of the causes,
these babies are our version of ven-
tilator-dependent patients.

I'd like to share with you the
problems these babies create for
us in neonatal intensive care, some
of the problems! think we create for
them. Then | would like to share a
possible solution to some of these
problems.

In November, there were eight
infants less that 12 months old re-
ceiving care in lowa hospitals be-
cause they were ventilator de-
pendent. Seven were housed at
University Hospitals in lowa City,
and three others had just died with-
in the past several weeks. Pres-
ently there are no lowa infants
receiving home ventilator care.
There are some older children on
ventilators, but not alarge number,

probably somewhere in the range |

of four to 10 in the entire state.
There are six infants with chronic
lung disease that are home and re-
quire supplemental oxygen and

by Herman A. Hein, MD

another two that are housed at
University Hospitals. To the best of
my knowledge there are no lowa
infants receiving care in chronic
care facilities because they are
ventilator or oxygen dependent.

The number of beds available to
provide care for critically ill new-
borns is a chronic problem in most
neonatal intensive care units. |
am not prepared to discuss why
neonatal intensive care units have
not expanded their capabilities to
meet this need, but! must notethat
financial matters, including the
availability of nursing personnel,
are important issues. Contrary to
popular opinion, which is consis-
tent with the hue and cry over ris-
ing costs of medical care, many
hospitals are not financially sol-
vent. A large number of hospitals
that provide tertiary neonatal in-
tensive care are teaching institu-
tions, and these institutions are
experiencing severe financial con-
straints. Accordingly, the hope for
expanding facilities by these insti-
tutions is not a reality in the near
future.

In the meantime, babies with
chronic lung disease are occupy-
ing beds two, four or six months in
the neonatal intensive care units.
Eventually the chronically ill ven-
tilator-dependent infant is moved
to another area of the hospital,
usually to a pediatric intensive
care unit or to an intermediate type
of unit on a pediatric ward. The

move is not based on the baby’s or
the infant's needs, but rather on
the availability of a bed. The net
effect of this type of uncontrolled
transfer is fragmentation of care.
Related to this matter is the gen-
eral issue of primary care givers for
these infants. Most people would
agree that as things evolve, the
neonatologists are the ones who
are and should be responsible for
these babies. But once the baby
leaves the NICU, this really isn’t
true in many instances. Becauseof
the heavy workload of most neona-
tologists, the logistical type of prob-
lem is a major one in trying to give
care when the babies are scattered
throughout the hospital. For ex-
ample, in our hospital, once a
baby leaves the NICU and goes to
the pediatric ICU, it’s athree-block
walk. If the baby goes over to the
intermediate level on one of our
pediatric wards, it adds another
two blocks. Logistically it gets to
be a major problem, resulting in
fragmentary care. In my exper-
ience there really hasn't been an-
other group of physicians that has
leaped forward and said, “I’m sure
willing and eager to take care of
these kiddies with chronic lung
disease.” | guess | thought that pe-
diatric pulmonologists would be
first in line, but again, in our insti-
tution that simply has not been the
case. They are willing to consult
if requested, but they are not avail-
able to take over the primary care.

Herman A. Hein, MD, is professor of pediatrics at the University of lowa — Department of Pediatrics and is director oflowa e114
Perinatal Care Program in lowa City. IA.

 
The problems that infants with
chronic lung disease present are
complex and varied — respiratory,
cardiovascular, nutritional,
growth and development, surgical
and many, many more. If we are go-
ing to be abie to provide home care
for ventilator-dependent infants,
it is important that coordination
of hospital and community re-
sources begin some considerable
time before this move is antici-
pated. Given the current state of
affairs, | am not very optimisticthat
this is going to occur with any reg-
ularity. To help solve the prob-
lems, | believe there are several
things we can do.

Facilities should be developed
within acute care institutions that
provide neonatal intensive care to

house all ventilator-dependent in-
fants who are six weeks of age or
older and are making no progress
in being weaned from the ventila-
tor. Medica! supervision should be
provided by a neonatologist or a
pediatric pulmonologist, and ap-
propriate consultation can be re-
quested as needed. | would also
suggest that a cadre of nurses pro-
vide care to the children in this
special unit. Using this approach,
the following advantages emerge:
1) location of care giving ceases to
be a problem; 2) there is continuity
of care; 3) coordination with com-
munity resources can be antici-
pated and begun with sufficient
lead time; 4) knowledge will ac-
cumulate because of the consis-
tency of care given by nurses as

well as physicians and other pro-
viders; and 5) practical, problem«
oriented clinical research can be
fostered.

| believe it’s important for us to
begin to accumulate a solid basis
of knowledge about this vexing
problem, including not only as-
pects of prevention but also those
measures thatarerelatedtochron-
ic care giving. This information
should be refined and disseminat-
ed nationwide as soon as possible.
Perhaps if major teaching institu-
tions can combine this group of in-
fants in one clinical area and care-
fully document the results of care
giving, we can begin to make pro-
gress in what currently is a frus-
trating experience for parents and
caregivers alike. @