Breastfeeding Issues for parents who have children with Down Syndrome, Spina Bifida, Cleft Lip/Palate or Heart Disease: Findings from the ConnectEpeople project

Marlene Sinclair, Julie Mc Cullough, David Elliott, Anna Latos-Bielenska

Research output: Chapter in Book/Report/Conference proceedingConference contributionpeer-review

Abstract

Background

There is a lack of detailed and descriptive information available for parents who have babies with congenital anomalies (CAs). Babies with CAs may require early surgical or intensive neonatal monitoring or a range of investigative procedures that may result in decreased opportunities to initiate breastfeeding or for mothers to express milk for their babies. In some cases, the medical needs take priority over any breastfeeding goals. However, this requires further exploration and consideration as children with severe CAs may have severe health conditions and as such are likely to be in greater need of the immunological and psychological benefits of breastmilk.

Objective:
To determine breastfeeding practices and needs of parents with children with Down
Syndrome, Spina Bifida, Cleft Lip/Palate and Heart Disease (CAs).

Method:

An online open survey was developed using Qualtrics to obtain data on a range of issues including infant feeding in 2018. The survey was available in English, Polish, Portuguese and Spanish. The study formed part of the EUROlinkCAT project and received ethical approved from Ulster University Research Ethics Committee.

Results:
Eighty surveys were completed and quantitative and qualitative data were analysed within the Qualtrics system.

Almost 50% of these babies were given breastmilk (from the breast (27%), via NG tube 11% and via bottle 9%). The remainder were given formula using the same methods and 2% were on IV fluids. Babies were given breastmilk up to 36 weeks (n=61).

Parents struggled to feed their babies and shared concerns about latching, failure to succeed and the lack of specialist support. They suggested additional help from midwives, lactation consultants, peer support workers and access to online resources.

Conclusion:
Children with CAs receive breastmilk for over 6 months as recommended by the WHO, in spite of condition-specific challenges. However, parents perceived a definitive lack of understanding and specialist support. Recommendations to access online resources including chat lines and Facebook need to be explored so that appropriate, timely and relevant online support is made accessible to all parents and there is multi-professional input.

Original languageEnglish
Title of host publicationAll Ireland Maternity and Midwifery Festival 2020
Publication statusPublished - 11 Feb 2020
EventAll Ireland Maternity and Midwifery Festival 2020 - Croke Park, Dublin, Ireland
Duration: 11 Feb 202011 Feb 2020

Conference

ConferenceAll Ireland Maternity and Midwifery Festival 2020
CountryIreland
CityDublin
Period11/02/2011/02/20

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