What to Expect: First Few Weeks

What to Expect: First Few Weeks

Guidance and information for the first few weeks of Down Syndrome care

Transitioning to Community Based Child Development Services

On hospital discharge, a referral to the child development team (CDT) will be made by the discharging team (in-take form in Barnet Child Development Team Referral). For older children who have moved into the area, the same referral form should be used with as much retrospective information as possible.

All cases will be discussed in the following Tuesday's multi-agency intake meeting, where a plan will be made for who within the team will see the family and when.

Every new baby will be referred to and seen by:

  • Community paediatrician (for families who have a Barnet GP). First appointment by 3 months of age. Appointments are usually held at Edgware Community Hospital (EGH), Burnt Oak Broadway, Edgware HA8 OAD, in children's outpatients or occasionally in an alternative centre, like Underhill children's centre.
  • Community paediatric physiotherapists usually see families at Oak Lane clinic in East Finchley within 3 months of leaving the hospital.
  • Early Years SEND Advisory Team contacts the family within three weeks during term-time and arranges a visit within 1-2 weeks. There may be a delay in school holidays, but there will always be a point of contact given to families. The Early Years SEND Advisory Team can be contacted by the hospital team when a baby is born if they identify that very early support would be beneficial. This is only for families who live in the Borough of Barnet; otherwise, a referral to the Early Years SEND Advisory Team will need to be made to that borough. There is a parents' WhatsApp group for families in Barnet that have a child with Down Syndrome that families can be added to if they wish. See further information below.
  • Paediatric dysphagia team (part of the Speech and Language Therapy (SALT) service) - all children with DS will receive a feeding assessment by a specialist SALT early on, in a community setting or in hospital if concerns arise before discharge. Sometimes a referral to a tertiary centre for this assessment may also be recommended. We know these babies can have significant feeding difficulties, with risks of aspiration, which can go undetected, so this needs to be evaluated at every point of contact with families. (See Dysphagia, Speech and Language Therapy (SLT) - Red Flags for feeding).
  • In Barnet, there are also community neonatal nurses who see all babies with DS within a few days of discharge and as frequently as required, with regular weights, etc. They are based in the neonatal unit and will liaise with the neonatal consultants to troubleshoot any issues.

Some babies will also be referred to and see:

  • Paediatric dietician - Children at risk of aspiration or who are unable to meet their nutritional requirements orally may need a period of enteral tube feeding, which will be managed by the community home enteral tube feeding dietitian. Any health professional can refer, but referrals usually come from a discharging hospital dietitian or nurse. Referrals to Specialist Paediatric Dietitian, Home Enteral Tube Feeding team (See Dietetic Service and Weight Management).
  • Homecare nurses (paediatric) - a referral form for homecare will also be done by the hospital if the baby is going home with an NGT or on oxygen and needs ongoing support at home to manage these, working closely with the paediatrician.

Health Visitors

Every child has a community health visitor. Health visiting teams work with mothers and fathers, their families, and community groups to promote the health and well-being of children and reduce inequalities from the antenatal period until your child starts school.

Health visitors are nurses or midwives who have undertaken additional training in community public health nursing. They help parents learn and develop the skills required to bring up their children. Health visitors deliver the Healthy Child Programme, supporting families to give their children the best possible start in life and reach their full potential. As part of this universal offer, health visitors carry out mandated health and child development reviews at key stages:

  • Antenatal.
  • New birth (9 - 14 days).
  • 6 - 8 weeks.
  • 9 - 12m.
  • 2 - 2 ½ years.

These mostly take place in children's centres around the borough.

Further information: Health visiting in Barnet.

Contact: Healthy Child Programme for Barnet.

Download: Resources for health visitors.

Breastfeeding Support Service (Also Accessed Via Health Visiting)

Infant feeding support is offered by all members of the health visiting team at the new birth visit and any follow-up contacts at home or in the child health clinic. There is also a Breastfeeding Support Service which provides mothers with information on breastfeeding, delivered by qualified breastfeeding support workers. Health visitors do support parents who are formula feeding their babies by providing information on choosing milks and making up feeds, and helping them to feed safely and responsively.

More information on the Whittington NHS site: Infant feeding and relationship building.