Introducing the Cardiac Nurse Specialist team
Meet the “Cardiac Nurse Specialist Team” They are Justine Kidd, Kay Dyer, Jacqui Nisbett and Kate Butler also they have 2 family support workers called Nikki Rehman and Rachel Thompson.
The heart is one of the most important organs in the body; it's also one of the most complicated.
Because of that, there are quite a few things that can go wrong with it, before and after birth. But poorly hearts can be made well again – and that's what the doctors at Birmingham Children's Hospital try to do.
To help you understand the medical jargon and treatment options, as well as support you emotionally and practically, the department has a team of four nurses called the "heart liaison sisters".
They are Justine Kidd, Kay Dyer, Jacqui Nisbett and Kate Butler. The first time you meet them, you might have been told your unborn baby has a problem with his or her heart. Or you might be a child or teenager who's been diagnosed with a heart murmur.
"We try to meet every family as soon as there's a diagnosis," explains one of the team. "Although doctors explain everything, it's hard to take in so much detail all at once, so our job is to help you understand the diagnosis and types of treatment available. And we'll help you prepare for them. We'll also link with other agencies in the community for when your child leaves hospital.
"Some diagnoses are made antenatally, at about 20 weeks of pregnancy. Not only are you devastated to hear something is wrong, you also have a lot of decision-making to do: you may choose not to continue with the pregnancy; or you may decide to carry on and have your baby operated on after they're born."
Birmingham Children's Hospital is a "centre of excellence" for looking after children with single ventricle conditions – where the heart has only one adequate-sized functional pumping chamber (ventricle) – and surgery is usually successful.
"With these conditions there is now an approximately 80 per cent chance a child will be okay," says one of the team. "They will never have a normal circulation but most will have a good quality of life."
Nevertheless, it's still a shock and a huge worry and the liaison team is there to guide you through the minefield of information and seesawing of emotions you are likely to experience whether your child has a congenital or acquired heart problem.
"We are here to help at what is a very difficult time,". "Because this is a centre of excellence, families come from all over the UK and Europe, so they don't have their normal family support around them. Sometimes all they want is someone to talk to about how they feel."
The Cardiac Nurse Specialist Team also provide practical support, from explaining the effects of the heart condition, lifestyle issues and education to helping you transfer from the children's hospital to adult healthcare services.