Counsel parents of a neonate with critical aortic stenosis — OSCE

Communication framework

Acknowledge the shock and the fear directly. The parents have gone from a healthy newborn to an intensive care unit in three days, and their world has collapsed. Begin by sitting down, making eye contact, and acknowledging their fear: "I know this is every parent's worst nightmare, and I want to explain what has happened and what we are going to do." Do not minimise the severity, but do not leave them without hope — the prognosis with appropriate treatment is good. [2]

Explain the diagnosis in plain language. Your baby was born with a narrowing in the main exit valve of the heart — the aortic valve. Before birth, the baby was fine because a blood vessel called the ductus allowed blood to bypass the narrowing. That vessel normally closes in the first few days of life, and when it closed, your baby's heart could not pump blood to the body properly. That is why your baby became so ill so quickly — it was not something that went wrong in the last day, it was there from birth, and we only saw it when the duct closed. [2] [4]

Explain the prostaglandin and the breathing tube. The medicine we are giving through the drip — prostaglandin — keeps that bypass vessel open so blood can reach your baby's body while we plan the fix. The breathing tube is there because that medicine can sometimes make babies forget to breathe, so we are breathing for your baby to keep them safe. Your baby is not in pain, and we will take the tube out as soon as the fix is done. [2]

The intervention and the plan

Explain the balloon valvuloplasty. The fix is a procedure called balloon valvuloplasty. A cardiologist passes a thin tube through a blood vessel in the groin up to the heart, and a tiny balloon opens the narrowed valve to widen the exit. It does not need open-heart surgery — it is done through the tube. The procedure has a high success rate, and most babies improve immediately once the narrowing is relieved. The main thing we watch for afterwards is whether the valve leaks, which we can manage if it happens. [3]

Address the question of cause and guilt. This is not caused by anything you did or did not do. The aortic valve formed with two leaflets instead of three — a bicuspid valve — and this is one of the commonest differences a baby can be born with. About one or two in every hundred babies have it, though not all of them become this narrowed. You could not have prevented it, and nothing in your pregnancy caused it. It is sometimes inherited, so we may suggest checking other family members, including you and your other children, with a heart scan. [4] [1]

Close with the trajectory and the safety net

Lay out the long-term plan honestly. After the procedure, your baby will need regular heart scans — at first frequently, then less often as they grow. The narrowing can come back, and if it does we can repeat the procedure or discuss other options including surgery. Some children need further procedures as they grow, and we will follow your child for their whole life with a heart specialist. I will not pretend this is a one-time fix, but I will tell you that most children with this condition, treated properly, grow up to live full and active lives. [1]

Agree a clear plan and a safety net. Give the parents the name of the treating cardiologist, the plan for the procedure, the expected timeline, and the number to call with questions. Confirm their understanding by asking them to repeat the plan. Offer a link to the cardiac liaison nurse and to a reliable family support organisation. Book a follow-up conversation after the procedure, once the baby is stable, to revisit the counselling when the acute fear has settled. [2] [1]