Down Syndrome
Early Care Pathway: Management by Neonatal Unit staff and Community Paediatricians
(including checklist and contact details for Community Paediatric Teams)

The timing of diagnosis disclosure and its handling are central to the parents initial reaction and
adjustments to their baby, as well as their subsequent working relationship with health care
professionals

If there is a clinical suspicion of Down syndrome the consultant neonatologist on call should be
asked to review the baby as soon as possible. Confirmation by chromosomal analysis is usually
available within 48-72 hours.

Diagnosis should be given by a senior paediatrician (usually consultant) in the presence of both
parents.

The local community paediatrician needs to be contacted during the next working day in
accordance with the locality areas set out below. The community paediatrician may well try to
see the baby and parents before discharge from the hospital if possible.

The community paediatrician will need to be told:
o
o
o
o
Infant’s name and DOB, Address
GP details
Referring neonatal consultant name
Location of baby (PNW / TC / Home) now and over next few days

Ensure that a Down Syndrome insert is put in the baby’s personal Child Health Record (the ‘red
book’) and that their growth is plotted both in this book and on a specific Down Syndrome
Growth Chart in their hospital notes.

Parents should be given a copy of the Downs Syndrome Association information booklet –
“DSA New Parent Guide July 2011”. Copies can be downloaded from :
http://www.downs-syndrome.org.uk/download-package/new-parents-pack/
[Last accessed 13/01/2015]
Write HV and Community Paediatrician’s contact details in Red Book




Inform GP, community midwife and health visitor prior to discharge.
If any social concerns, have a low threshold for referral to Disabled Childrens Team SW for
support
If significant feeding difficulties refer to SALT (feeding specialist) before discharge
The following investigations need to be arranged and their details noted in both the hospital
record using the checklist below and the red book prior to discharge:
Authors :Dr Paul Mannix / Dr Mary Gainsborough on behalf of the Down Syndrome Group
Date :
May 2012
Review: November 2014
Page 1 of 6
o ECG performed before discharge and arrangements made for formal cardiology review
even if the cardiovascular examination appears normal. This review should be within 6
weeks but will often be earlier than this.
o FBC and blood film performed and results noted.
o Thyroid function tests performed and results noted.
o Ophthalmic assessment needs to be performed by the neonatal team to exclude
cataracts. If there is any difficulty in examination or evidence of a lack of red reflex the
baby needs formal assessment by an ophthalmologist.
o Audiology is done via Universal Screening but results need to be noted in Red Book.

Send a formal referral letter to named Community Paediatrician giving ALL details of the above
tests and referrals with results or dates of appointments as known. A copy of the checklist below
could be made and sent with this letter.
Authors :Dr Paul Mannix / Dr Mary Gainsborough on behalf of the Down Syndrome Group
Date :
May 2012
Review: November 2014
Page 2 of 6
Down Syndrome Checklist
Name……………………………….. DOB………………….. Hospital Number……………………..
Parents Names…………………………………………………Contact details ………………………
………………………………………………. GP details …………………………….
WHO
WHEN
RESULT
Parents spoken to by
consultant and given
Down’s leaflet
GP informed
HV informed
ECG done / arranged
Cardiology review
done / arranged
FBC and film done
Thyroid function tests
done
Eye examination for red
reflex done / arranged
Hearing screen
done /arranged
Phone:
Referral to Community
Paediatrician made
Letter:
Authors :Dr Paul Mannix / Dr Mary Gainsborough on behalf of the Down Syndrome Group
Date :
May 2012
Review: November 2014
Page 3 of 6
Community Paediatric Consultants - Contact Numbers
Please contact the office number below for the area where the child lives (if you don’t know,
pick the closest and try – the admin staff will be able to advise you.)
If you have difficulty with this, consultants can be contacted directly via BRI switchboard. If
necessary ask to speak to the Community Paediatrician on-call for child protection who should
be able to advise you who to contact.

North Bristol (Westgate House – Southmead Hospital) – 0117 3235361 (Fax 0117 3235363)
Tare BIU, Matthew ELLIS and Tamsin WOODBRIDGE

East / Central Bristol (Eastgate House) - 0117 3408071 (Fax 0117 9510480)
Clare SHEAHAN, Helen BREWER, Emma BRADLEY and Emma HECKFORD

South Bristol (Osprey Court) – 0117 3408080 (Fax 0117 3408081)
Maria BREDOW, Mary GAINSBOROUGH, Latha CHANDRA, Melanie PARKER and Richard
WILLIAMS

South Glos (Kingswood Hub) 01454 862433 (Fax 01454 863078)
Jo BROOKS, Amanda CUNDY, Lindsey MACKINTOSH and Diana HOWLETT

North Somerset (Drove Road) 01934 418804 (Fax 01934 613256)
Saras HOSDURGA
(updated 13/01/15)
Authors :Dr Paul Mannix / Dr Mary Gainsborough on behalf of the Down Syndrome Group
Date :
May 2012
Review: November 2014
Page 4 of 6
Down syndrome
Early Care Pathway: Early Management by Community Paediatrician
After being informed by NNU, make immediate plan for first contact and inform NNU of this:
o On ward (optimal)
o Home visit
o Early clinic appointment
These visits are for early support and content will vary according to family’s needs but consider:
o Aetiology of Down syndrome
o Development of child with Down syndrome
o Immediate and future health concerns
o Local resources
o Long term prognosis
o Offer introduction to parents of child with DS (via Bristol Area Downs Syndrome Support
Group [info@BADSS.org.uk])
o Ensure have DSA booklet and offer further parent info as appropriate
o Early feeding problems
At first clinic visit:
 Document result of
o thyroid screening / TFT
o FBC
o cardiac assessment/plan for review


Examination to include
o Growth plotted on DS chart
o Cardiac
o Red reflex
o Visual behaviour
Refer to:
o Audiology – to see by 6-10 months
o Ophthalmology (at CCHP Eye clinics) to see by 18 months (or sooner if concerns)
o Portage (by copy of letter but need parents phone no and language spoken)
o SALT
 urgent if feeding concerns
 routine re anticipated communication issues
o Consider Physio referral for specific concerns (not routine)
o Inform Disabled Children Team SW
 who will routinely send info to family and register diagnosis with family’s consent
 refer if SW contact needed
o Copy report to HV (who should send copy of 8-12 mth universal developmental check and
targeted 2 yr check to Paediatrician)
o Consider behavioural issues/parent-child relationship - referral to Infant Mental Health
Specialist/CAMHS or other agencies
o Childrens Disability Team (CCHP Area team) via Intake meeting – follow ‘Developmental
Delay in <5s’ care pathway and consider if meets criteria for an Early Support
Developmental Assessment (including referral to Key worker service and ongoing Family
Support Planning Meetings)
Authors :Dr Paul Mannix / Dr Mary Gainsborough on behalf of the Down Syndrome Group
Date :
May 2012
Review: November 2014
Page 5 of 6

Provide parent information:
o PHCR insert
o Early Support Down Syndrome booklet
o ES Family pack
o Local parent support groups (see list of Useful numbers)
o Motor development advice sheet (by Physio)

Book ongoing clinic follow-up.

See ‘Annual Medical Review of Children with Down Syndrome’ for ongoing care
(within ‘CCHP Down Syndrome Care Pathway including Annual Medical Review Checklist.pdf’
available at www.nbt.nhs.uk/downsyndromereferral )
Authors :Dr Paul Mannix / Dr Mary Gainsborough on behalf of the Down Syndrome Group
Date :
May 2012
Review: November 2014
Page 6 of 6