About the Cardiac Infant Home Monitoring Programme

We look after infants with the following cardiac conditions. Please note, this list is not exhaustive, and your child may be referred to home monitoring for another complex cardiac condition.

• Single Ventricle Circulation & shunt-dependent physiology
• Tetralogy of Fallot - pre surgical support
• High pulmonary blood flow
• Large Ventricular Septal Defect (VSD)
• Atrioventricular Septal Defect (AVSD)
• Double Outlet Right Ventricle (DORV)

Depending on your child's cardiac diagnosis, you will receive appropriate clinical monitoring and education to ensure your baby stays safe and healthy at home.

Depending on your child's diagnosis, we will provide appropriate teaching and training to help support you in caring for your baby at home. This training may take place over the phone, or at Great Ormond Street Hospital as an inpatient or in a clinic setting.

Your Cardiac Nurse Specialist will provide a package of training relevant to your child's cardiac diagnosis. This will include cardiac 'red flags,' which are signs and symptoms to look out in your child at home.

As part of the home monitoring programme, we will liaise with your health visitor to ensure your baby receives weekly weights.

If necessary, we will also refer your baby to a local children's community nursing team (CCNT) to carry out weekly observations, weights and support for feeding.

Some babies with cardiac conditions may require support with nutrition and feeding. If this is the case, we will work closely with a local dietician to ensure your baby is feeding and growing well.

We are here to support not only your child, but your wellbeing too. If you would like the input of psychologists or family support workers, we can help you access the appropriate support.

During our weekly calls, we will ask you a number of questions to gain a clear picture of how your baby is doing at home.

We will ask you about your baby's breathing, skin colour and feeding, as well as if your baby has had any recent temperatures or illness. We will also ask other relevant questions about immunisations, appointments and family support in place to have an accurate assessment of your child and family.

We will encourage you to ask any questions or voice concerns you have regarding your baby, and we will answer your questions and support you as needed.