Antenatal counselling of spina bifida: we need to do better

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Arch Dis Child Fetal Neonatal Ed Month 2021 Vol 0 No 0
Letter
Antenatal counselling of spina
bifida: we need to dobetter
Screening is a routine part of pregnancy
care, with ultrasound seen as a social rite
of passage and a bonding opportunity,1 2
and many women report they are inade-
quately prepared for ultrasound finding
an abnormality.1 3 After a fetal abnor-
mality has been found, further investiga-
tions may be required, such as in- utero
MRI, following which prospective parents
need high- quality, understandable clinical
information to make decisions about the
management of their pregnancy.
Recently, SHINE (Spina Bifida,
Hydrocephalus, Information, Network,
Equality) published results from their
survey of 71 families who had a child with
spina bifida (SB) recruited from social
media on antenatal counselling (found at
www. shinecharity. org. uk/ antenatal).4 The
results are sobering. Feeling under pres-
sure to make quick termination decisions
with insufficient information and support
was a common experience for prospec-
tive parents. Half were referred to feto-
maternal units initially, with a further
quarter referred only after deciding to
continue their pregnancy. Most were
not offered written information on the
condition. Where prognosis was offered,
it was overly negative, with an incorrect
emphasis on severe cognitive impairments
not confirmed by the literature,5 and
included derogatory terms. The majority
of responders noted ‘fruit’ terminology
was used, such as a ‘lemon- shaped head’ or
‘banana- shaped cerebellum’. While a small
proportion reported this terminology was
helpful, half found it distressing, with the
term ‘lemon’ particularly synonymous
with ‘unintelligent’.
Most families reported moderate,
severe or extreme pressure to choose a
termination of pregnancy, with a particu-
larly common phrase being, ‘most parents
in your situation end their pregnancy’.
Termination of pregnancy was often
offered in the same discussion as diag-
nosis, increasing the perceived pres-
sure to decide quickly, and was offered
multiple times during pregnancy if
prospective parents were committed to
their pregnancy. Overall, three quarters
of responders noted that their child was
functionally better than the prognosis
offered antenatally.
Prospective parents deserve high- quality
information on their fetus’ condition.
The data from SHINE are limited by the
constraints of the methodology and may
not be entirely representative, but clini-
cians should be aware that a significant
proportion report suboptimal counselling.
Several recommendations can be made:
►Overly negative phrases should be
avoided.
►‘Lemon’ and ‘banana’ terminology
should be reserved for sonographers
and obstetricians, and not used with
prospective parents.
►Once prospective families choose to
continue with the pregnancy, it should
not be offered repeatedly during
the pregnancy, so it does not appear
healthcare professionals think they
have made the wrong decision.
►Outcomes for a fetus should be
imparted by clinicians with experience
of caring for children with SB later in
life, including paediatric neurologists
and neurosurgeons.
►Information on prenatal and postnatal
surgery for SB should not be the sole
focus of counselling.
►Conversations should include accurate
information on prognosis in terms of
motor/walking abilities, cognition,
bowel and bladder function, need for
ventriculoperitoneal shunt, joint prob-
lems, sexual function and fertility, and
likelihood of independent living,
employment and quality of life.
Anthony Richard Hart ,1
Jenny Smith- Wymant,2 Gill Yaz2
1Paediatric Neurology, Sheffield Children’s NHS
Foundation Trust, Sheffield, UK
2SHINE (Spina Bifida Hydrocephalus Information
Networking Equality), Peterborough, UK
Correspondence to Dr Anthony Richard Hart,
Paediatric Neurology, Sheffield Children’s NHS
Foundation Trust, Sheffield S10 5DD, UK;
a. r. hart@ sheffield. ac. uk
Contributors ARH wrote the letter; GY and JS- W
collected and interpreted data, as well as reviewed and
edited the letter.
Funding The authors have not declared a specific
grant for this research from any funding agency in the
public, commercial or not- for- profit sectors.
Competing interests None declared.
Patient consent for publication Not applicable.
Provenance and peer review Not commissioned;
internally peer reviewed.
© Author(s) (or their employer(s)) 2021. No commercial
re- use. See rights and permissions. Published by BMJ.
To cite Hart AR, Smith- Wymant J, Yaz G. Arch Dis Child
Fetal Neonatal Ed Epub ahead of print: [please include
Day Month Year]. doi:10.1136/archdischild-
2021- 322762
Accepted 26 September 2021
Arch Dis Child Fetal Neonatal Ed 2021;0:F1.
doi:10.1136/fetalneonatal-2021-322762
ORCID iD
Anthony RichardHart http:// orcid. org/ 0000- 0003-
4018- 3238
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Consortia. Protected by copyright. on October 18, 2021 at Sheffield Unihttp://fn.bmj.com/Arch Dis Child Fetal Neonatal Ed: first published as 10.1136/archdischild-2021-322762 on 16 October 2021. Downloaded from