This page contains information to help you find support and information for you and your child after receiving a medical diagnosis or while waiting for diagnosis.
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Receiving a medical diagnosis for your child…
Realising your child may have a medical condition or health concern or receiving a diagnosis for your child is a very stressful time for parents and families. Parents have told us that this can be an especially confusing and isolating time as they try to understand their child’s condition and understand what happens next.
The information below provides advice, parent tips and resources that may help you during this time.
Preparing for appointments where you might receive a diagnosis for your child…
Parent Tip – After receiving a diagnosis your child is still the same child they were before!
Advice and tips from parents
Finding information
It is natural to try and find more information about your child’s condition and what to expect.
The tips below might help you find useful and reliable information.
Tips for finding information
Receiving a diagnosis during pregnancy…
You may be looking at this section because your health care team have told you that your baby has a genetic or physical condition or is not developing as expected. It is likely to be a worrying time for you.
This section provides advice to help you prepare for appointments and advice from other parents who have received a diagnosis for their baby during pregnancy.
General advice: Preparing for appointments and receiving a diagnosis
Advice from an experienced parent
Receiving a Rare Diagnosis or Undiagnosed…
Receiving a diagnosis of a rare condition for your child can be an uncertain time for parents and caregivers. A diagnosis is often provided by a GP or specialist with very little information available. This is perhaps because they are also hearing the name of this condition for the first time and have little to no information to offer at that time.
Parents have provided us with the advice and tips below to help you and we have a created a list of general support organisations
and information. You can also search our database to see if we have information on supports related to your child’s diagnosis.
Advice and tips from the team at Rare Ireland
Understanding key terms and roles
Irish Rare Disease Organisations and Information
See below for a number of general Irish based supports and resources that may be of assistance.
Search our database for condition specific organisations we are aware of.
Rare Ireland
rareireland.ie | rareireland@gmail.com
A charity supporting families living with a rare condition.
National Rare Diseases Office
hse.ie/NRDO | rare.diseases@mater.ie| tel:01 854 5065
The National Rare Diseases Office (NRDO) provides current and reliable information about genetic and rare diseases to patients, families and health professionals.
Rare Diseases Ireland
The Rare Diseases Ireland website has useful information about rare diseases, undiagnosed conditions, clinical trials and and how to connect with patient organisations in Ireland and abroad
SWAN Ireland (Syndromes Without A Name)
facebook.com/swan.ireland.77 |syndromeswithoutanameireland@gmail.com
SWAN Ireland is a new Irish support group, specifically dedicated for people who have a syndrome with no known diagnosis, and their families, living in Ireland.
What Comes After A Diagnosis Booklet – Rare Ireland
Rare Ireland What Comes After A Diagnosis
Advice and personal stories from parents of children with a rare diagnosis
European/International Rare Disease Support Organisations and Networks
Orphanet
Orphanet aims to provide high-quality information on rare diseases. The website allows you search for information on a rare disease and also provides information about expert centres, patient organisations, clinical trials and research projects related to that disease.
Rare Connect (International Organisation)
A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages.
Receiving a Life-limiting Diagnosis…
If your child has been diagnosed with a health condition which means their life will be shortened, you will be facing an extremely difficult time trying to cope with your child’s diagnosis and to understand the medical system and options.
The section below provides advice from parents and useful resources and information.
Parents advice
- 1
Build a support network: Surround yourself with people who can offer practical and emotional support. Seek out other parents who have been through a similar experience.
- 2
Seek counselling: Professional counselling can help you and your child navigate the emotional challenges of a life-limiting diagnosis.
- 3
Plan for your child’s care: Create a plan for your child’s care that takes into account their wishes and your own values.
- 4
Celebrate your child’s life: Focus on celebrating your child’s life and making the most of the time you have together.
- 5
Make memories: Create special memories with your child such as taking a trip or doing an activity you both enjoy.
- 6
Take care of yourself: It is important for parents to look after their own physical and emotional well-being during this difficult time.
Key Terms
We have compiled a listing of Irish based support organisations and useful information sources to help you and your family.
You can also search our database for condition specific support organisations.
Support Organisations
Every Life Counts – Online Outreach for parents
everylifecounts.ie | info@everylifecounts.ie| 01 879 2382
Every Life Counts is an organisation that supports families whose babies were diagnosed with a life limiting condition before and after birth. They provide a variety of supports, information and resources to families affected by a poor diagnosis in pregnancy.
Little Blue Heroes Foundation
littleblueheroes.org | info@littleblueheroes.org | 086 171 1433
Little Blue Heroes provide supports to children with life-limiting and life threatening illnesses and their family.
A Little Lifetime Foundation – Pregnancy Support After Diagnosis
alittlelifetime.ie | info@alittlelifetime.ie| 01 882 9030
A Little Lifetime provides a Facebook support group for parents who have received a fatal foetal diagnosis and have been told their baby will die in utero or shortly afterwards.
LauraLynn Ireland
lauralynn.ie | info@lauralynn.ie| 01 2893151
LauraLynn provides specialist palliative and supportive care services to meet the needs of children (0-18 years old) with life-limiting conditions and their families in Ireland. LauraLynn provides care for the child while also supporting the whole family with targeted supports available to siblings, parents, grandparents and more. Care can be delivered at the hospice building in Dublin or in the family home with the Care in the Community Team providing care and supports in children’s homes across Leinster, Cork, Kerry and Limerick.
Jack and Jill The Childrens Foundation
jackandjill.ie | info@jackandjill.ie| 045 894 538
Jack and Jill provides in-home nursing care and respite support throughout Ireland for children up to the age of 6 with severe to profound neurodevelopmental delay. This may include children with brain injury, genetic diagnosis, cerebral palsy, and undiagnosed conditions. Another key part of their service is end of life care for all children up to the age of 6, irrespective of diagnosis.
Useful Information
Things We Wish We Knew – Parent guide to receiving a life limiting diagnosis
Information and advice created by parents who received a life limiting diagnosis for their child
Together For Short Lives – UK Organisation
Together For Short Lives is a UK charity. It provides excellent information to support anyone who is caring for, or has cared for, a child with a life-limiting or life-threatening condition- Please note support services are available in UK only.
Receiving a life limiting diagnosis during pregnancy – Soft Ireland
View Leaflet | soft.contactme@gmail.com| 1800 213 218
SoftIreland has prepared a leaflet for parents who have received a fatal fetal or life-limiting diagnosis during pregnancy
The Children’s Palliative Hub
childrenspalliativehub.com | info@aiihpc.org| 01 491 2948
The Palliative Hub provides information for parents, carers and those involved in the care of a child with a life threatening or life limiting illness and who may require palliative care need in Ireland.
Premature births or NICU care…
This section signposts to useful resources if your baby was born prematurely or needs care in the NICU for other healthcare reasons.
Useful information
Irish Neonatal Health Alliance
inha.ie/ | info@inha.ie| tel: 085 1920 602
The Irish Neonatal Health Alliance provides information and support for parents with a baby born prematurely or receiving care in the NICU
Babies in Neonatal Care: A guide for parents
A guide for parents whose preterm/premature or unwell child may need care in a neonatal unit such as the Neonatal Intensive Care Unit (NICU).
Neonatal and NICU Care – Common terms you may hear
A guide to common terms for parents whose preterm/premature or unwell child may need care in a neonatal unit such as the Neonatal Intensive Care Unit (NICU).
National Neonatal Transport Program
The National Neonatal Transport Program website provides information to help parents know what to expect and how to prepare when their premature or sick infant (up to 28 days old) needs to be transferred between hospitals/NICUs for intensive/specialised care.