‘This collaboration really matters’ – New care pathway for parents of babies with Down syndrome

The aim is to provide additional support and information to help parents prepare for their new baby.

The collaborative pathway was set up after feedback from families that having more support would have helped them know what to expect during their pregnancy and after the birth.

Support will be offered to all families who are expecting to have a baby with Down syndrome and includes:

*An initial appointment with the screening specialist midwife to discuss test results, explain the antenatal care pathway and provide a Portsmouth DSA welcome pack;

*An offer of a direct referral to Portsmouth DSA;

*An offer of antenatal referral to Community Paediatricians to discuss potential development needs and services;

*Specialist scans in the fetal medicine unit at Princess Anne Hospital, Southampton, at 16 and 20 weeks of pregnancy;

*Additional growth and wellbeing scans in the fetal medicine unit at Queen Alexandra Hospital at 28,32 and 36 weeks of pregnancy;

*A 32-week appointment with the screening midwife, neonatal consultant, and infant feeding specialist midwife to discuss a birth plan, care for baby and infant feeding;

*An offer of induction of labour at 39 weeks.

Director of Midwifery Lynn Woolley said: “This collaboration really matters as it allows a whole team approach to wrapping a holistic package of care around parents from the antenatal period until the birth of their new baby and beyond.

“Having the expertise and experience of a team will make a very positive difference to parents. We are very grateful to everyone in this collaboration for their commitment to making it happen.”

Portsmouth Down Syndrome Association Chairperson Rachael Ross MBE added: “We are delighted to have developed this first care pathway.”

Mum Jade gave birth to Henry, who was born with Down syndrome in 2022 at QA Hospital.

She said: “As a parent who would have benefited from this support last year, I am very happy to see this.

“This support would have enabled me to feel much more confident. I would have been very grateful for this level of personalised support for me and my baby.”

Julia Langley, Antenatal and Newborn Screening Specialist Midwife, explained: “We wanted to ensure the care provided was not just medical but considered the social and emotional needs of families as well.

“By offering some additional appointments in the antenatal period it provides an opportunity to start building trusting relationships with the professionals who will be involved in their baby’s care.

"In addition, parents can ask questions and hopefully reduce some of their anxieties to ensure their babies get off to the best possible start.”

For more info about the pathway, call 02392 286000 ext 3740, or email Portsmouth Down Syndrome Association at [email protected]