ORIGINAL ARTICLE
Professional opinion on oral cleft during pregnancy: a comparison
between Israel and the Netherlands
Wies Maarse
1
*, Chantal W. B. Boonacker
2
, Oren Lapid
3
, Henriette F. N. Swanenburg De Veye
4
, Zeev Weiner
5
, Moshe Kon
1
,
Johannes J. M. van Delden
2
and Aebele B. Mink van der Molen
1
1
Department of Plastic and Reconstructive Surgery, Wilhelmina Children’s Hospital, University Medical Center Utrecht, Utrecht, The Netherlands
2
Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands
3
Department of Plastic and Reconstructive Surgery, Academic Medical Center, Amsterdam, The Netherlands
4
Department of Pediatric Psychology, Wilhelmina Children’s Hospital, University Medical Center Utrecht, Utrecht, The Netherlands
5
Department of Obstetrics and Gynecology, Rambam Medical Center, Haifa, Israel
*Correspondence to: Wies Maarse. E-mail: w.i.maarse@gmail.com
ABSTRACT
Objective The aim of this study was to assess the opinion of obstetric care providers who perform prenatal
ultrasounds to screen for anomalies and who advise women about their options, including termination of pregnancy,
when an oral cleft is detected. We compared providers’ opinions about pregnancy termination for isolated oral cleft in
the Netherlands, where the number of terminations is low, and in Israel, where the number is high.
Methods Online questionnaires were used. The questions assessed the providers’ views regarding the estimated
burden of treatment, the functioning ability, and the level of happiness of children with an oral cleft and their parents.
Additionally, we assessed providers’ opinions on pregnancy termination for isolated oral cleft.
Results In the Netherlands, more professionals considered oral cleft a disability (rate differences 17.8%, 95%
confidence interval: 0.5–33.1%) than in Israel. In the Netherlands, 10.6% of respondents (compared with 11.1% in
Israel) thought that an isolated cleft was a reason for terminations of pregnancy (TOP) (rate differences 0.6%, 95%
confidence interval: À12% to 10.9%).
Conclusions Prenatal care providers in the Netherlands and Israel do not differ in their opinions about the severity of
oral cleft and the acceptability of TOP for an isolated oral cleft. This study shows that prenatal care providers’ attitudes
do therefore not explain the dramatic difference between these countries in the number of TOP for isolated oral cleft.
© 2015 John Wiley & Sons, Ltd.
Funding sources: None
Conflicts of interest: None declared
INTRODUCTION
Oral clefts are among the most common congenital malfor-
mations; they occur in approximately one out of 700 live births.
1
Because the use of ultrasound screening during pregnancy has
become the standard of care, the prenatal diagnosis of oral clefts
is common and has a detection rate of 88%.
2
There is some controversy about the parental, social, and
ethical consequences of prenatal detection of oral clefts.
3
The
prenatal detection of an oral cleft has numerous advantages.
Not only are the parents better prepared psychologically for
the anomaly, but awareness of the diagnosis provides an
opportunity to educate about both the treatment of oral clefts
and the management of possible feeding problems. The prenatal
diagnosis of an oral cleft also provides an opportunity to offer
additional genetic testing to screen for possible associated
anomalies and chromosomal defects.
4,5
The disadvantages of
the prenatal diagnosis of oral cleft are the possibility of a false
positive diagnosis and the resulting emotional stress on the
pregnancy.
6,7
The fact that at present time prenatal surgery
may not be an option or may carry very high risks is another
disadvantage.
8
Additionally, there are concerns about the
possible increasing number of terminations of pregnancy
(TOP) of fetuses with an isolated oral cleft.
9
Because most
nonsyndromic oral clefts are nonlethal birth defects that have
an excellent functional and esthetic prognosis with proper
treatment, the use of prenatal diagnosis raises important
ethical issues, especially in terms of TOP.
10,11
High numbers of TOPs for prenatally diagnosed isolated oral
clefts have been reported in Israel (93.4%).
9
In the Netherlands,
the number of parents who choose TOP when an oral cleft is
detected is low (6.7%).
12
The reasons for these differences are
unknown. In addition to cultural and religious influences, the
Prenatal Diagnosis 2015, 35,1–5 © 2015 John Wiley & Sons, Ltd.
DOI: 10.1002/pd.4570