Who's who in the medical team looking after someone with Down's Syndrome and a heart problem.
     
     
     
     
     

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The Heart Team

Once a heart defect is suspected, the G.P. or Paediatrician will refer the child to a cardiac unit. Each unit is made up of a wide variety of staff, each with an important role in caring for the child.

Paediatric Cardiac Surgeon

This is the surgeon who will actually operate on the child. You will probably see them just before surgery, when they will explain what they intend to do, and just after the operation, when they will explain what has been done and how it will affect the child.

Paediatric Cardiologist

This is the doctor who arranges the overall care for the child. It is their task to discover what exactly is wrong with the heart. You will usually see the cardiologist at the clinic, to discuss the child's condition, how to manage it, and the options open to you. They will be the doctors who perform catheters either to obtain more detailed information about the child's or to treat the problem where it is possible to do it in this way.

Registrar / House Doctor / House Officer

You may see one of these doctors at your outpatient's appointment instead of, or in conjunction with, the cardiologist. They assist in any investigations and also in the operating theatre.

Cardiac Liaison Sister / Outreach Nurse

A liaison sister or outreach nurse may visit the family at home to do a 'check-up' on the child or simply to chat about the child's condition, the operation, staying in hospital etc. The liaison sister is there to help and support you through the hospital stay with any queries, problems or anxieties you may have.

Ward Sister / Charge Nurse

This is the senior nurse who is in charge of the hospital ward. If they are male they are called Charge Nurse, if female they are called Ward Sister.

Anaesthetist

This doctor will see the child before surgery or cardiac catheter to ascertain his / her needs. They will give the anaesthetic and monitor the child's breathing and ventilation throughout the operation.

PICU Doctor / Intensivist

This doctor will care for the child whilst they are in the Paediatric Intensive Care Unit (PICU).

PICU Nurse

These nurses are specifically trained to care for and monitor the child constantly whilst they are in Intensive Care.

Physiotherapist

A physiotherapist will visit the child soon after surgery to encourage correct breathing and movement.

Radiographer

This is the person who will perform any necessary x-rays.

Perfusionist

This person operates the heart / lung bypass machine during surgery.

ECG technician / Echo Technician / Cardiac Technician

These are the people who perform non invasive investigations on the child to aid the cardiologist in making the diagnosis of the child's heart defect.

Social Worker

A social worker can help in many ways with financial and family problems.

Chaplain

Almost all religions are catered for in the hospital, and contacts are available through the ward staff.

Playleader

This person uses play to help the child before the operation, and is there to help entertain and encourage them during their stay in hospital.

There are a wide range of nurses, administration staff and domestic workers also to be found in each unit. They are all there to help, and all wear identity badges. If you are not sure what anybody is doing or saying, don't be afraid to ask. You know the child best and all the team will value your views.

"The night before surgery Emily was awake all night, crying and fretful. I knew she wasn't 100% and I was worried that being so tired she would take longer to recover. The nurses thought she was out of her routine; the registrar said she was teething; the surgeon was happy to go ahead. When the anaesthetist examined her, he thought she was 'snuffly' and was not prepared to put her at any risk. The operation was cancelled and we were extremely relieved, despite having waited 16 months. When we got home she cut a tooth with a cold and temperature. We went back a fortnight later when everyone was happy with her and she had her operation.".

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