Parent Resources

Table of Contents

Navigating the world of the Neonatal Intensive Care Unit (NICU) can be emotionally overwhelming and info-hungry. While we’ve covered the team and communication aspects, this expanded guide offers further resources and support for parents, including websites, hotlines, and helpful information.

Information for Parents

Understanding Your Baby’s Condition
Seek information about your baby’s specific medical condition from reputable sources like the National Institutes of Health or your doctor.

Baby Development in the NICU
Learn about expected milestones and potential developmental delays related to prematurity or medical conditions.

Charities

There are many national and local charities which can provide you with support and information. Our recommendations are below, but also ask your nurse or health visitor about any local groups.

Bliss
The major UK charity for premature and sick babies. They provides free information, support and a helpline. Helpline: 0500 618140 (9am to 9pm)
www.bliss.org.uk

Best Beginnings
Provide free information, DVDs and support for parents
www.bestbeginnings.org.uk

Sands
Provide information and support for those who have lost a baby. Helpline: 0207 436 5881
www.uk-sands.org

Ronald MacDonald Charity
Provide free accommodation around the county for families with children in hospital
www.uk-sands.org

Tiny Hearts
Supports families with premature babies through online resources, forums, and peer support groups.
https://www.tinylife.org.uk/

Additional Charities and Support

Born Too Soon

Cleft Lip & Palate Association

Contact A Family

Cystic Fibrosis Trust

Downs Syndrome Association

Long Term Ventilation

National Childbirth Trust (NCT)

SANDS (Stillbirth And Neonatal Death Society)

Twin And Multiple Birth Association (TAMBA)

Tommy’s (Tommy’s free app for parents)

Ickle Pickles – Raising money for lifesaving equipment on neonatal units

Neonatal Butterfly Project

Supportive Resources

Essential Resources

Books

The Preemie Parent’s Guide
A Roadmap for the NICU Journey
by Danya A. Gluckstein and Barbara H. Thompson.

Tiny but Mighty
A Guide for Preemie Parents
by Wendy Gross and Melissa Atkins.

Holding Hope
A Guide for NICU Parents
by Cheryl L. Haugen and Susan G. Heldt.

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