Single Ventricle Service Home Monitoring Programme

Babies born with single ventricle hearts will never have a ’normal’ circulation. Children with these conditions will undergo a series of operations to help improve their circulation (also known as 'staged palliation').

However, after the first stage, babies can very quickly become unwell. This may occur due to several reasons, which includes:

• The shunt (the tube that directs more blood to the lungs) becoming blocked
• The heart’s pumping chamber working less efficiently
• The reconstructed body artery becoming narrow
• General illness, such as a respiratory infection

Home monitoring helps detect small changes in your baby at home. During weekly interactions with the Cardiac Nurse Specialist team, we will perform telephone assessments to determine if your baby requires urgent medical attention. Home monitoring improves survival for interstage infants and provides support for their families.

Before you leave GOSH, you will receive training on the following:

• Saturation monitoring and troubleshooting
  • We will provide you with an oxygen saturation monitor to use at home on a daily basis, between stage 1 and stage 2 operations
• ‘Red flags’ (recognising signs of deterioration in your child)
• Basic Life Support (BLS)
• Nasogastric (NG) tube feeding - all single ventricle babies will go home with a tube in their nostril that goes into the stomach. This is for your baby's safety and to support optimal growth prior to the next surgery.

As part of the Home Monitoring Programme, your baby will receive:

• Weekly weight checks by the Health Visitor or Children's Community Nursing Team (CCNT)
• Weekly observations and assessment by the CCNT
• Support for NG tube feeding through the community nurses
• Daily oxygen saturations done at home by you
• Weekly calls from a named Cardiac Nurse Specialist
• Support for feeding - your named Cardiac Nurse Specialist will advise you on how much to feed your baby as they grow. We may also refer to a local dietician if you need extra support.
• ‘Open access’ to your local Accident and Emergency (A&E) department or children’s ward
• Referral to a local Paediatrician with Expertise in Cardiology (PEC)

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.