We have a variety of easy to understand publications and online information resources available to help heart families learn more about childhood heart condition.

In addition to the resources and information produced by @Heart, you can also find a list of services organisations and related links that may be useful to heart families. Please email  This e-mail address is being protected from spambots. You need JavaScript enabled to view it if you would like to suggest any links to add to our website.

We have a variety of easy to understand publications to help heart families learn more about childhood heart conditions. These publications are written by parents and medical professionals for use by parents, teachers, caregivers, nurses and anyone else affected by a childhood heart condition.

		Heart Children Book by Linda Davies and Michelle Mann Written by founders Linda Davies and Michelle Mann, HEART CHILDREN BOOK led to the establishment of Heart Children NZ which is now called @Heart. We are in the process of updating the contents of the book. As we only have a handful of the books left, we have made the existing version available online to give families access to the information in the book. Please click on the image of the Book to view the existing version.
		Educating Children with Cardiac Conditions Authored by Teresa Kedzlie, a past-teacher at the Paediatric Cardiac Unit formerly housed in Green Lane Hospital and Mary Crosbie, a heart parent, this booklet provides useful information for teachers of children with cardiac conditions.  It explains the different types of congenital and acquired heart conditions, risks and potential problems post-surgery, and school re-entry assistance for the heart child.  Email This e-mail address is being protected from spambots. You need JavaScript enabled to view it for a copy of this booklet.
		Welcome to Holland Written by New Zealand parents of children with a heart condition, this book focuses on the positive experience that families gain from raising a heart child. It deals with the Why Me questions and takes parents through the stages of anger, guilt and fear.  It also celebrates the special experience of having a heart child. Email This e-mail address is being protected from spambots. You need JavaScript enabled to view it for a copy of this booklet.
		Knowing but not Knowing Designed for expectant mother whose unborn baby has a congenital heart condition, this book helps parents to prepare for the inevitable so that when the baby arrives they are better able to deal with the situation. Email This e-mail address is being protected from spambots. You need JavaScript enabled to view it for a copy of this booklet.
		What you don't expect when you are expecting Heart mum Lucy Smith discovered during her pregnancy that her unborn son has a special heart.  Although nothing could quite prepare her for the news, she was determined to take control of the new situation and to enjoy the rest of her pregnancy as much as she could.  For expectant mothers who have recently found out their unborn baby has a heart condition, there are strategies to help you cope during this period of uncertainty. Click on the image to the left to download this article.
		The Use of Antibiotics before Dental Visit It is important to understand if you child still requires to be given antibiotics before dental treatment.  This document summarises the key points of the 2008 guidelines on the use of prophylaxis antibiotics for the prevention of bacterial endocarditis in New Zealand. Click on the image to the left to download this document.
		Resources for Teachers Functions of the Heart explains the different parts of the heart and their functions.  Using simple drawings and graphics, this booklet helps students to easily understand how our heart works. Click on the image to the left to download this booklet.

@Heart is pleased to offer an online resource for people wishing to know more about the various heart conditions. The site includes details on tests, procedures and operations along with information on health and nutrition, exercise, schooling, adult congenital heart issues. The website uses coloured and animated illustrations of many congenital heart conditions. It also includes a glossary of terms and an explanation of tests and procedures. Click this link www.heartnz.congenital.org to view the site or select one of the images below to choose a topic of your choice.

Dr Tom Gentles, Clinical Director of the Paediatric Congenital Cardiac Service at Starship Hospital endorses this information service. "@Heart provides an excellent support service for a great many children with heart conditions, and their families. This new service will provide a great deal of valuable information and advice for those affected by congenital heart disease including parents, medical and healthcare professionals alike."

Conditions & Treatment Explained

Long QT Syndrome

Long QT syndrome (LQTS) is an uncommon hereditary disorder characterised by abnormal electrical activity in the heart. It affects mostly children and young adults with frequent faints or even sudden death. More information can be found on Auckland District Health Board’s website.

Here are some organisations that provide services that may be useful to heart children and their families.

Here are some commonly asked questions and answers. If you have suggestions for this page, please email This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

General questions often asked by parents of heart children:

Q. Will my child always have trouble feeding?
A. No; it may seem like a never-ending nightmare at times - there have been many heart children who have been nasogastrically fed for a year or two and their parents have wondered if they will ever learn the chewing instinct, but they do. All it takes is time.

Questions often asked by parents taking a child to Starship Hospital for treatment or surgery:

Q. Do I need to take my child's medication with me?
A. Yes; take at least enough for 3 to 4 days.

Q. Do I need to take my child's formula?
A. Yes; take enough for 3 or 4 days. It should be provided at Starship, but sometimes there can be a delay.

Q. Should I take a car seat?
A. Yes; sometimes you are able to take it on board the plane, which is great if you have a toddler who thinks they would like to wander up and down the aisles of the plane. You will definitely need one for the taxi or shuttle from the airport to the hospital.

Q. What accommodation is available?
A. Family accommodation is provided by Ronald McDonald House Auckland - contact your home hospital social worker to arrange a booking, or alternatively contact the Starship booking office on 09-307 4949 ext 23-619. There is also He Kamaka Oranga Marae within the hospital grounds, or motels nearby. Accommodation on Ward 23B is limited and additional parent facilities within Starship Hospital are now available. If you have concerns, contact Ward 23B reception 09-307 4949 ext 23-230 so you can get an update on what will be available for you.

Q. What do I have to pay for accommodation?
A. If you are the accompanying adult of a child aged 15 years or younger, assistance will be provided under the Travel and Accommodation Assistance Policy of your home hospital. It is recommended that you contact your home hospital social worker before going to Starship to confirm what is assistance is available and how to access this. Alternatively, you may like to speak with Ward 23B Social Worker, phone 09-307 4949 ext 23-627.

At Ronald McDonald House accommodation is free of charge. To help cover running costs, any donation would be very much appreciated and all donations over $5.00 are tax deductable.

If you stay at the marae, it is by koha. The cost of motels varies depending on locality and occupancy, the average is around $90 per night.