Cardiac Infant Home Monitoring
We are a team of experienced Cardiac Nurse Specialists (CNS) who look after babies with complex congenital heart disease. Patients are referred to the Cardiac Infant Home Monitoring Programme as per our pathway, when they have a named GOSH cardiology consultant. A Cardiac Nurse Specialist will perform regular telephone consultations with parents to assess their baby and gain a clinical picture of how their baby is doing at home.
Who we monitor
We look after infants with the following cardiac conditions. Please note, this list is not exhaustive, consultants may request patients to 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 patients’ cardiac diagnosis, parents will receive appropriate clinical monitoring and education to ensure their baby stays safe and healthy at home. We liaise very closely with the patients named cardiology consultant to address any clinical concerns.
Training we provide
Depending on the patient’s diagnosis, we will provide appropriate teaching and training to help support parents in caring for their 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. Each patient will have a named Cardiac Nurse Specialist, who will provide a package of training relevant to the cardiac diagnosis. This will include cardiac ‘red flags,’ which are signs and symptoms to look out in your child at home.
When patients on our Home Monitoring Programme attend GOSH for clinic appointments or tests, we would meet the families and assess the patients at this time also. We also provide support to parents and address any concerns around parents wellbeing, or issues around housing or finances and can refer them as appropriate to our social work department, family support team or psychology team.
What to expect during telephone conversations
During our weekly calls, we ask parents you a number of questions to gain a clear picture of how their baby is doing at home. We will ask questions about their 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 the child and family.
We will encourage parents to ask any questions or voice concerns they have regarding their baby.
Support at home and network engagement
As part of the home monitoring programme, we will liaise with local teams who support families at home. We will liaise with the named health visitor to ensure patients receive weekly weights. If necessary, we will also refer patients to a local children’s community nursing team (CCNT) to carry out weekly observations, weights and support for feeding. We would then liaise with these local teams who can provide us clinical updates on how patients are in the community.
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 patients are feeding and growing well. We also work closely with PEC (paediatrician with expertise in cardiology) within the network, to ensure patients have paediatrician follow up as needed or open access to their local A&E.
We also liaise with patient’s GP’s for prescription requests or any other issues that can be managed by the GP. We recognise the importance of working collaboratively with the local teams to provide ongoing care to this fragile group of cardiac.