Breaking Bad News: What a Fetal Medicine Consultant Wants You to Know — And Why Peer Support Matters

Martin Maher
May 11
7 min read

Updated: May 15

Written by Mr Martin Maher, Consultant Obstetrician and Fetal Medicine Specialist

There are moments in a clinical career that stay with you.

Not because they were dramatic, or because something went wrong, but because they carried a weight that no amount of training fully prepares you for. Moments where you are sitting across from a patient — often with their partner, sometimes alone — and you are about to change the course of their pregnancy, and in many ways, their life.

Breaking bad news is one of the most demanding and underappreciated aspects of fetal medicine practice. It sits at the intersection of clinical precision and deep human compassion. And it is something I believe we need to talk about more openly — not just for the benefit of those of us delivering the news, but for the families who receive it and must find a way to carry it forward.

The Moment Before the Words

Every fetal medicine consultation begins with hope. A patient comes to a scan expecting reassurance. Often, that is exactly what we can give.

But sometimes, the image tells a different story.

In fetal medicine, we are trained to look carefully — at anatomy, growth, blood flow, amniotic fluid, cardiac structure. We are trained to spot what is absent as well as what is present. And it is in that gap — in the absence of something that should be there — that some of the most devastating diagnoses are made.

One of the most profound examples of this is bilateral renal agenesis.

Bilateral Renal Agenesis: A Diagnosis That Changes Everything

Bilateral renal agenesis is a condition in which a baby develops without kidneys. Both kidneys are absent. It is rare — occurring in approximately 1 in 3,000 to 4,000 pregnancies — but when it is found, the implications are profound and the conversation that follows is one of the hardest a clinician will ever have.

Without kidneys, a baby cannot produce urine. Without urine, amniotic fluid cannot accumulate in the normal way. Without amniotic fluid, the lungs cannot develop properly. This cascade of consequences — known as Potter sequence — means that bilateral renal agenesis is, in the vast majority of cases, a condition incompatible with life outside the womb.

As a fetal medicine consultant, I have sat with families at the moment this diagnosis is delivered. I have seen confusion give way to disbelief, and disbelief give way to grief — all within a single appointment. I have watched couples reach for each other across a consultation room table. I have sat in silence with patients who simply could not find words.

These consultations are never routine. And they should never feel routine.

The Clinical Framework for Difficult Conversations

Over the years, clinical training in breaking bad news has improved significantly. Frameworks like SPIKES — Setting, Perception, Invitation, Knowledge, Empathy, Summary — provide a structured approach to ensuring that patients receive information in a way that is clear, compassionate and paced appropriately to what they can absorb.

In my practice, I try to hold a number of principles when delivering difficult news:

Honesty without brutality. Patients deserve the truth. But truth can be delivered with care, with compassion, and with time. There is no need to rush through a diagnosis. Giving space — real space, with silence, with tissues, with the absence of clinical urgency — matters enormously.

Clarity over complexity. When a family is in shock, medical terminology can become a barrier. I try to use clear, plain language that leaves no ambiguity, while still being sensitive to how much information a patient can hold in that moment.

Next steps, not just the diagnosis. Once the initial shock has been acknowledged, most patients will need a pathway. What happens next? Who will I speak to? What are my options? Providing a clear structure — even if the immediate options feel limited — gives families something to hold onto when everything else feels uncertain.

Follow-up matters. A single consultation is rarely enough. Bad news needs to be revisited, unpacked and processed. I always ensure that families have a clear route back — whether that is a follow-up appointment, a named contact, a written summary, or a referral to appropriate specialist support.

What Families Need Beyond the Consultation Room

There is something important that I have come to understand more deeply over the years of doing this work, and it is this: no matter how good a clinical consultation is, it cannot give families everything they need.

A fetal medicine consultant can explain a diagnosis clearly and compassionately. We can outline options, provide information, answer questions and signpost to specialist services. We can sit with families in their shock and hold that space with as much humanity as we are able.

But what we cannot give families is the lived experience of someone who has been through exactly the same thing.

That is something only another family can offer.

When a couple sits in front of me having just been told their baby has bilateral renal agenesis, one of the most powerful questions they will eventually ask — not always immediately, but in the hours, days and weeks that follow — is: has anyone else been through this? Is there anyone who understands what this feels like?

The answer, quietly and powerfully, is yes.

Renal Agenesis UK: Peer Support from Families Who Understand

Renal Agenesis UK is a charity dedicated to supporting families affected by renal agenesis — including both bilateral renal agenesis, where the prognosis is sadly most severe, and unilateral renal agenesis, where one kidney is absent but long-term outcomes can be significantly more positive.

What makes Renal Agenesis UK so valuable is not clinical expertise — it is lived experience. The charity connects families with others who have received the same diagnosis, navigated the same impossible conversations, and found a way through grief, uncertainty and loss. That kind of peer support — the reassurance that you are not the first, that you are not alone, and that others have walked this path — offers something that even the most compassionate clinical team cannot replicate.

For families facing a diagnosis of bilateral renal agenesis, the grief process is complex and often isolating. The condition is rare enough that most families will never know anyone in their personal circle who has experienced it. Friends and family, however loving and well-meaning, will not always understand the particular nature of this loss — the grief of a baby who is still present in the womb, of a pregnancy that continues while a family processes a prognosis that carries no hope of survival. This is a deeply specific kind of sorrow, and it deserves deeply specific support.

Renal Agenesis UK provides exactly that. Through peer connection, community, shared stories and advocacy

They offer families:

The knowledge that they are not alone — connecting them with other parents who have received the same diagnosis and survived the experience with honesty and courage
A space to process grief without having to explain the condition — because the community already understands
Practical guidance and experience — from families who have navigated options, birth plans, memory-making, and the aftermath of loss
Ongoing support — not just in the acute period following diagnosis, but in the longer journey of grief, subsequent pregnancies and long-term emotional recovery
Advocacy and awareness — helping to improve care for future families through campaigning and education

For families with a diagnosis of unilateral renal agenesis — where the prognosis is very different and many babies go on to live healthy lives with careful monitoring — Renal Agenesis UK also provides a community of shared experience. Long-term follow-up in these cases is important, and connecting with families who have already navigated childhood and beyond with a single kidney can be profoundly reassuring.

Why I Signpost Families to Renal Agenesis UK

As a fetal medicine consultant, my role in a consultation is to provide the clearest, most honest and most compassionate clinical picture I can. But I have learned that the work does not end when a patient leaves the room.

Part of truly supporting a family through a difficult diagnosis is ensuring that the door to ongoing help remains open — and that they know where to find people who understand their experience from the inside. I now consider signposting to Renal Agenesis UK a routine and important part of managing a diagnosis of renal agenesis in any of its forms. Not as an afterthought, but as a deliberate and meaningful part of the care pathway.

The moment a family hears the words "your baby's kidneys are not there" is one of the worst moments of their lives. But it is not the end of their story. And knowing that a community exists — of families who have been through this, who will not flinch from the conversation, who will sit with them in their grief — can make an extraordinary difference to the road ahead.

If you have received a diagnosis of renal agenesis — bilateral or unilateral — during your pregnancy, I would encourage you to reach out to Renal Agenesis UK. You do not have to navigate this alone.

You can find out more at www.renalagenesis.org.uk

A Final Thought

Breaking bad news is not a skill you perfect and then move past. It is a practice — something you return to, refine and reflect on throughout your career. Every consultation teaches you something. Every family shows you something about resilience, love and the extraordinary capacity of people to face the unimaginable with courage.

As clinicians in fetal medicine, we are trusted with the most significant moments of people's reproductive lives. That trust demands not just technical excellence, but emotional presence — the willingness to sit with discomfort, to hold space for grief, and to ensure that families leave our care knowing that support exists beyond the clinical setting.

If you are a patient who has received a difficult diagnosis during your pregnancy and you are looking for further support, please do not hesitate to contact our team at The Pregnancy Experts. We are here not just to scan, but to guide, support and signpost you to the right people at every step of your journey.

Mr Martin Maher is a Consultant Obstetrician and Fetal Medicine Specialist at East Lancashire Hospitals NHS Trust and Clinical Director for Obstetrics and Gynaecology. He is also a Training Programme Director and Regional Ultrasound Coordinator for the North West School of Obstetrics and Gynaecology. The Pregnancy Experts is his consultant-led diagnostic pregnancy and gynaecology ultrasound clinic.