Answering questions about ongoing Congenital Cardiac care

With so many changes to healthcare announced in the news many LHM families, teenagers and adults have been asking about what hospitals are doing to keep them safe if they have an outpatient appointment or inpatient treatment planned during the Coronavirus outbreak.

Be reassured that doctors and nurses with specialist knowledge of congenital heart disease will remain at the head of the service and all of their patients will have access to them in an emergency or to answer questions about their cardiac care.

What will happen to my outpatient appointments?

Outpatient appointments

Many of the units are turning to telephone or video conferencing for their outpatient appointments. The clinic will contact parents or patients about any changes to their appointment date or the style of appointment planned. If tests are needed, like a scan or an ECG, a timed appointment will be made with precautions put in place to keep patients apart.

Some routine appointments will be rebooked to reduce the number of patients needing to visit the hospital during the crisis.

This service will headed up by the cardiologists you know at your normal hospital.

INR testing

Patients on Warfarin are still having their INR levels tested. If you usually visit the hospital or your GP for this service it will continue. The teams testing blood will take special care of their patients and wear protective clothing and gloves. The number of appointments offered may reduce through the crisis period but if INR tests are needed they will be done.

What happens if my child needs an operation?

Surgery and Interventions

Non-essential surgery or interventions will be cancelled. In most cases children and adults with half a heart can wait for an operation or intervention. The Fontan operation for example is best done when ITU is free of any respiratory infections.

Emergency operations and interventions will be done as needed. The aim will be to keep the children and adults with half a heart well.

Beds in ITU have been put aside for congenital cardiac patients.

Norwood, Glenn and shunt operations, in the early part of life, and emergency Fontan operations will continue to be done as needed by individual patients.

Which hospital will I be treated at?

Most operations will be done at your usual hospital however some patients may need to move hospital for their surgery. To keep patients safe and to maximise the beds available to treat patients with Coronavirus some patients will need to move to another specialist unit. In many cases, it will still be the surgeon that they know doing their operation but in all cases it will be surgeons who are expert at treating single ventricle heart conditions.

Changes to the Brompton service

The current information available tells us that patients treated at the Brompton will go to the Evelina Children’s Hospital if they are a child and the Heart and Harefield Hospitals if they are an adult.

https://echo-uk.org/2020/03/27/evelina-update-2703/

Changes to the Glenfield service

If you are treated at Glenfield any planned surgery will be done at Birmingham Children’s Hospital or the Leicester Royal Infirmary.

http://www.eastmidlandscongenitalheart.nhs.uk/

What do I do in an emergency?

Cardiac concerns

Contact your cardiac team in the normal way. If your child is ill with a cardiac related problem seek your cardiac team’s advice.

If your child is ill in any other way contact your GP.

Coronavirus

If you suspect that your child has coronavirus;

• They have a persistent cough
• Are more breathless than normal
• They have a high temperature

Stay isolated and contact 111. They will guide you through the treatment pathway for the virus. You will also need to contact your cardiac team so that they can link with the team treating you for the virus.