The Tiniest Babies: A Registry of Survivors With Birth Weight Less Than 400

Grams
Edward F. Bell and Diane K. Zumbach
Pediatrics 2011;127;58-61; originally published online Dec 27, 2010;
DOI: 10.1542/peds.2010-1855

The online version of this article, along with updated information and services, is
located on the World Wide Web at:
http://www.pediatrics.org/cgi/content/full/127/1/58

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The Tiniest Babies: A Registry of Survivors With Birth
Weight Less Than 400 Grams
WHAT’S KNOWN ON THIS SUBJECT: There have been isolated
reports of single infants surviving after birth at ⬍400 g. However,
these reports have not been compiled and summarized, and little
is known about the early health and development of these infants.
WHAT THIS STUDY ADDS: We have created a Web-based registry
of survivors who weighed ⬍400 g at birth. The Tiniest Babies
Registry now contains data on 110 infants. This report
summarizes the information submitted to the registry about this
extraordinary group of infants.
AUTHORS: Edward F. Bell, MD,a and Diane K. Zumbach,
MAb
aDepartment of Pediatrics and bHealth Care Information
Systems, University of Iowa, Iowa City, Iowa
KEY WORDS
tiniest babies, ⬍400 grams birth weight, micropremies,
extremely low birth weight, small for gestational age
ABBREVIATION
GRI—growth-restriction index
www.pediatrics.org/cgi/doi/10.1542/peds.2010-1855
doi:10.1542/peds.2010-1855
Accepted for publication Oct 12, 2010
Address correspondence to Edward F. Bell, MD, Department of

abstract Pediatrics, University of Iowa, 200 Hawkins Dr, Iowa City, IA

52242. E-mail: edward-bell@uiowa.edu

OBJECTIVE: The purpose of this project was to collect information on PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).
surviving infants with birth weights of ⬍400 g. Copyright © 2011 by the American Academy of Pediatrics

METHODS: A Web-based registry was started in 2000 after searching FINANCIAL DISCLOSURE: The authors have indicated that they
have no financial relationships relevant to this article to
for published reports of infants who survived to hospital discharge disclose.
despite being born at ⬍400 g. Fifteen cases were identified from sci-
entific and lay print and Web-based publications. Parents, patients, and
health providers were invited to submit data on additional infants. In
the case of submissions from parents or patients, the information was
confirmed by communication with a treating physician.
RESULTS: As of September 1, 2010, the Tiniest Babies Registry had
compiled data on 110 patients born between 1936 and 2010. The num-
ber of infants who survived each year increased since the early 1990s.
The infants in the registry weighed between 260 and 397 g at birth and
had gestational ages from 216⁄7 to 34 weeks. Eighty-three (75%) of the
patients are female. The 10 smallest infants are female, and the regis-
try contains only 1 boy who was born weighing ⬍300 g. The patients
were born in 10 countries, including 80 (73%) born in the United States.
The information on long-term functional outcome and health outcomes
is limited. Many patients have ongoing health and learning concerns,
and most of those for whom growth data are available remain short in
stature and underweight for their age.
CONCLUSIONS: Survival of infants born weighing ⬍400 g is rare but
increasing. The Tiniest Babies Registry provides a repository for infor-
mation about this remarkable group of infants. Pediatrics 2011;127:
58–61

58 BELL and ZUMBACH

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Survival to discharge is rare for in-
fants with a birth weight of ⬍400 g. The
discharge of such infants is often ac-
companied by hospital press releases
or local news stories identifying the
child as the world’s smallest infant.
When a 359-g girl was born at the Uni-
versity of Iowa Hospitals and Clinics in
1994, the parents inquired whether
other infants this size had survived in
other hospitals. This question led to an
attempt to collect reports of survivors
with birth weights of ⬍400 g from the
medical literature and lay media. The Ti-
niest Babies Registry (www.healthcare.
uiowa.edu/tiniestbabies) was activated
in January 2000 after a group of 15 pa-
tients had been identified. The purpose
of the registry was to gather information
about these extremely uncommon chil-
dren as a service to health providers and
parents who might face decisions about
obstetrical and neonatal management of
the very small fetus or infant of poten-
tially viable gestational age.
METHODS
Beginning in 1994, we began to look for
and collect reports of surviving infants
with birth weights of ⬍400 g. The bio-
medical databases Ovid and PubMed
were searched by using key words.
As journal articles reporting the sur-
vival of tiny infants were found, their
bibliographies were searched for ad-
ditional reports. The Internet was
searched by using key words such as
“tiniest baby” and “smallest infant.” In
addition, we had personal knowledge
of several cases, which were included.
At its inception, 15 patients were in-
cluded in the registry. Nine of these in-
fants’ cases were found in the medical
literature,1–9 1 was located by search-
ing the Internet,10 1 was found in the
Guinness Book of World Records,11 and
4 were identified and verified by per-
sonal communication, including 3 who
had been patients at the University of
Iowa Children’s Hospital. In some of the
early reports in which the birth weight
PEDIATRICS Volume 127, Number 1, January 2011
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was given in ounces rather than
grams,1,11 the conversion factor of
28.35 g/oz was used to convert the
weight to grams. The patient described
by Monro1 in 1939 was not weighed un-
til the day after birth, when she was
taken to a local grocery store to be
weighed. This weight, converted to
grams, was entered in the registry as
the birth weight.
Once the Web registry was activated in
2000, parents and health providers be-
gan to submit cases online by complet-
ing a brief form that requests limited
information about the patient and the
submitter (Fig 1). The registry was an-
nounced in the newsletter of the Amer-
ican Academy of Pediatrics Section on
Perinatal Pediatrics and on a neonatol-
ogy Web site (www.neonatology.org).
Registry data are captured in a data-
FIGURE 1
Web form for submitting data on a new patient
to the Tiniest Babies Registry. A second section
of the form provides space to enter any informa-
tion on published accounts of the infant in med-
ical journals, lay publications, or on the Web.
ARTICLES
base on a secure server but do not ap-
pear on the Web site until the data have
been validated. When a patient or fam-
ily member submits a new entry that
qualifies the infant by birth weight, the
submitter is contacted, usually by
e-mail, to request permission to com-
municate with a treating physician to
verify the submitted data. Once the in-
formation has been verified, the entry
is activated and appears on the Web
site. The verifying physician’s name is
listed on the Web site, but the family’s
name is not given, for the sake of their
privacy. Although the patients are not
identified on the Web site, links are
provided to reports that are already in
the public domain, and families are
given the option of submitting photo-
graphs of the child. In addition, the
submitters are invited to send subse-
quent updates on the child’s progress,
which are added to the information on
the Web site.
For each patient, a growth-restriction
index (GRI) was calculated as the birth
weight expressed as percentage of the
fifth-percentile birth weight for gesta-
tional age.12
RESULTS
As of September 1, 2010, the registry
contained 110 patients. The earliest
year of birth was 1936.2,13 Patients in
the registry were also born in 1937 and
1938, but the next recorded birth in the
registry was not until 1985 (Fig 2). The
number of infants surviving each year
has been increasing since the early
1990s. The patients in the registry
weighed between 260 and 397 g at
birth and had gestational ages from
216⁄7 to 34 weeks (Fig 3). The GRIs
ranged from 16% to 117% (Fig 4). All
patients except 2 (106 of 108 for whom
gestational-age information was
known) were small for gestational age;
that is, their birth weights were below
the fifth percentile12 (GRI ⬍ 100%). The
3 patients with the highest GRIs were
59
 TABLE 1 Countries of Birth of 110 Infants in
12 the Tiniest Babies Registry
Country No. of Patients
10 United States 80
Germany 10
No. of infants

8 Japan 9
United Kingdom 4
Canada 2
6
Dominican Republic 1
Israel 1
4 Italy 1
New Zealand 1
2
Switzerland 1
Total 110

0
1935 1940 1945 1950 1955 1960 1965 1970 1975 1980 1985 1990 1995 2000 2005 2010

Year of birth
tries in which the per-capita gross do-
FIGURE 2 mestic product ranked in the top 30
Birth years of surviving patients with birth weights of ⬍400 g.
worldwide in 2008, except for 1 pa-
tient.14 The 110 patients were identified
450 as follows: 45 were submitted by a
health provider; 39 were submitted by
400
the patient or a family member; 12
Birth weight, 8

350 were found in the medical literature; 8

were identified by searching the Web;
300 and 6 were found in newspapers or
magazines. During the 10 years since
250
the registry was started, submitted
200 data on 121 infants did not qualify be-
20 22 24 26 28 30 32 34 36 38 40 cause their birth weights were ⱖ400 g
Gestational age, wk or because they did not survive to
FIGURE 3 discharge.
Birth weight and gestational age for 108 infants in the Tiniest Babies Registry. Data for 2 patients are
not plotted because of lack of sufficiently accurate information about gestational length.1,2 The information on long-term func-
tional and health outcomes of the pa-
tients in the registry is limited. Most of
also the only 3 infants with a gesta-
the patients have ongoing health and
tional age of ⬍23 weeks. Only 3 pa-
learning concerns, and most of those
tients had GRIs of ⬍50%; their GRIs
120 for whom growth data are available re-
were 16%, 48%, and 49%, respectively.
main short in stature and underweight
100 The patient with a gestational age of
for their age. The impact of such se-
80 216⁄7 weeks was conceived by using in
vere fetal growth restriction on life
GRI, %

vitro fertilization; the gestational age

60 span and adult health is not yet known.
was calculated as the interval from the
40
The first reported survivor ⬍300 g at
insertion of the fertilized ovum to birth,
birth lived to the age of 44 years.11 Her
20 plus 14 days (Phuket Tantivit, MD, per- weight at 21 years of age was 106 lb;
0
sonal communication, 2007). her adult height is not known. The sec-
200 250 300 350 400 Eighty-three (75%) of the patients are ond survivor ⬍300 g at birth6 was re-
Birth weight, g
female. The 10 smallest infants are fe- ported to be doing well at 14 years of
FIGURE 4 male, and the registry contains only 1
GRI ([birth weight/fifth-percentile birth weight]
age.15 Her weight and height were 25.4
⫻ 100%) versus birth weight for 108 infants in male born weighing ⬍300 g. The pa- kg and 136.5 cm, respectively. Her aca-
the Tiniest Babies Registry. Data for 2 patients tients were born in 10 countries (Table demic performance was above aver-
are not plotted because of lack of sufficiently
accurate information about gestational 1); 80 (73%) were born in the United age, and she was reported to be well
length.1,2 States. All patients were born in coun- adapted psychosocially.

60 BELL and ZUMBACH

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DISCUSSION
The registry is not a complete collection
of survivors born with birth weights of
⬍400 g. We are aware of other patients
whose details have not been made avail-
able for inclusion in the registry.16 More-
over, as the survival of these infants be-
comes more common, it is inevitable
that additional qualifying infants will not
be captured in the registry.
We have not attempted to validate the ac-
curacy of the information in the registry
except to have a treating physician verify
the information submitted directly by pa-
tients or family members. The accuracy
of the birth weights for the 3 infants born
in the 1930s is questionable, given the
scales available. Oneofthesepatientswas
reportedly weighed on a grocery scale.1 In-
formation on the gestational age of these 3
infants is limited. One was reportedly born
6 weeks early11; 1 was born “3 months
early” 13; and 1 was said to be born after 7
months of pregnancy.1
The registry illustrates the well-known
survival advantage of female preterm
infants.17,18 Of the 110 infants in the reg-
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istry, 75% are females, and of the 11
infants born weighing ⬍300 g, 10
(91%) are females.
We hope the registry does not spur
competition to save the smallest infant
on record. We also do not want to
falsely raise the expectations of fami-
lies and health providers by suggest-
ing that most tiny infants can survive. It
is important to realize that appropri-
ately grown infants of this size would
not be sufficiently mature to survive.
The weight of 400 g is the 50th percen-
tile for a gestational age of 19 weeks.
The most common gestational age in
the registry is 25 weeks, and there are
only 3 infants with a gestational age of
⬍23 weeks. Our purpose has been
simply to provide a central repository
of information for the use of physi-
cians and parents who are faced with
decisions about the management of
pregnancies with severe fetal growth
restriction and postnatal management
of severely undergrown infants of via-
ble gestational age. The registry does
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ARTICLES
“intact” survival (ie, survival with an
acceptable level of disability); it merely
illustrates that survival with good
functional outcome is possible.
CONCLUSIONS
In its first 10 years, the Tiniest Babies
Registry accumulated information on
110 surviving infants with birth weights
of ⬍400 g. The longest known survival
for this remarkable group is 44 years,
but only 3 infants in the registry were
born before 1985. In the coming years,
more will become known about the im-
pact of birth weights ⬍400 g on long-
term health and longevity.
ACKNOWLEDGMENTS
This project was funded by University
of Iowa Health Care and the Depart-
ment of Pediatrics.
We thank Gregory M. Johnson and
Lee T. Carmen of University of Iowa
Health Information Systems for their
support. We are grateful to the pa-
tients, their family members, and the
health providers who have submitted
data to the Tiniest Babies Registry.
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61
The Tiniest Babies: A Registry of Survivors With Birth Weight Less Than 400
Grams
Edward F. Bell and Diane K. Zumbach
Pediatrics 2011;127;58-61; originally published online Dec 27, 2010;
DOI: 10.1542/peds.2010-1855
Updated Information including high-resolution figures, can be found at:
& Services http://www.pediatrics.org/cgi/content/full/127/1/58
References This article cites 13 articles, 2 of which you can access for free
at:
http://www.pediatrics.org/cgi/content/full/127/1/58#BIBL
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