Gentle hands for fragile smiles: dental care for children with EB
Caring for children with epidermolysis bullosa (EB) requires more than clinical skill – it demands empathy, adaptability, and trust. With skin as fragile as a butterfly’s wings, even routine dental care can pose serious risks. Jennifer Wood, a specialist dental nurse at Great Ormond Street Hospital, shares her experience of supporting children with EB through gentle, personalised dental care.
“When people ask me what it’s like working with children who have epidermolysis bullosa (EB), I often struggle to summarise it in a sentence. Epidermolysis bullosa is a rare genetic condition where the skin and mucous membranes are so fragile that even gentle friction can cause painful blistering and wounds. In the dental world, where mirrors, gloves, and suction tips are routine tools, such fragility demands a completely different approach. For nearly 17 years, I’ve had the privilege of caring for children with EB as a specialist dental nurse at Great Ormond Street Hospital. Although every child is different, one thing remains constant: this work must be led by gentleness, creativity, and compassion.
A first encounter that stays with you
I still remember my very first patient with EB. I was understandably apprehensive, not because I lacked training, but because I was acutely aware that a simple slip of a glove or a dry cotton roll could cause harm. That first appointment taught me more than any textbook ever could about pacing, listening, and above all, about earning trust. It’s a lesson I return to again and again, with every child I treat.
Understanding the EB spectrum
It must be emphasised that EB is not one condition, but a group of disorders. Its severity and presentation vary depending on the type: epidermolysis bullosa simplex (EBS), junctional EB (JEB), dystrophic EB (DEB), and Kindler syndrome. Each type brings their own oral challenges, ranging from minimal mucosal fragility to severe scarring, enamel hypoplasia, and even microstomia or ankyloglossia.
In DEB, for example, children often develop intraoral adhesions and limited mouth opening. Simple tasks such as brushing teeth or taking an X-ray can instead become enormous challenges. In these moments, our role becomes much more than technical. We’re not just dental nurses; we’re problem-solvers, educators, and emotional anchors.
A typical day (if such a thing exists)
No two days are the same in our department. My morning might begin with preparing the surgery to strict infection control standards – something we never compromise on. Many EB patients carry additional risks like MRSA or adenovirus, and with their fragile skin, our approach to cleanliness borders on the obsessive. Every surface is disinfected, every instrument lubricated, and infection alerts checked days in advance.
Appointments themselves are carefully choreographed. From the moment a child walks through the door, I’m reading their body language. Some children like to speak, others don’t. Some engage immediately, whilst others hide behind parents or toys. But the routine is the same: meet them where they are, go slow, and build trust. Over time, many of our patients feel safer opening up to the dental nurse than the clinician, which is a responsibility I don’t take lightly.
The role in detail
In EB care, even small clinical tasks take on a different meaning:
- Atraumatic technique is vital, with feather-light instrumentation, non-foaming pastes, and extra lubrication being standard.
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Protocol adaptation is constant. No two children can be treated identically.
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Sedation and GA support are common, and I work closely with the dental consultant and specialist dental team, EB nursing team and the anaesthetist to ensure the child is calm and safe throughout.
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Oral hygiene instruction for families is tailored and practical. What toothbrush won’t poke and scratch? Which toothpaste won’t burn but contains the correct amount of fluoride? How can you best try to brush when it hurts? We always encourage families to register with an external GDP to maintain continuity of care, and in a lot of cases, to carry out treatment if the condition is mild.
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Safeguarding and emotional support play a huge part. Parents and children often find it easier to confide in me during or after appointments, and I will always make space for those conversations.
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Infection control and radiation protection are also part of my remit in my roles as infection control lead and radiation protection supervisor. These are behind-the-scenes responsibilities, but vital to keeping our patients and staff safe.
The role in detail
In EB care, even small clinical tasks take on a different meaning:
- Atraumatic technique is vital, with feather-light instrumentation, non-foaming pastes, and extra lubrication being standard.
-
Protocol adaptation is constant. No two children can be treated identically.
-
Sedation and GA support are common, and I work closely with the dental consultant and specialist dental team, EB nursing team and the anaesthetist to ensure the child is calm and safe throughout.
-
Oral hygiene instruction for families is tailored and practical. What toothbrush won’t poke and scratch? Which toothpaste won’t burn but contains the correct amount of fluoride? How can you best try to brush when it hurts? We always encourage families to register with an external GDP to maintain continuity of care, and in a lot of cases, to carry out treatment if the condition is mild.
-
Safeguarding and emotional support play a huge part. Parents and children often find it easier to confide in me during or after appointments, and I will always make space for those conversations.
-
Infection control and radiation protection are also part of my remit in my roles as infection control lead and radiation protection supervisor. These are behind-the-scenes responsibilities, but vital to keeping our patients and staff safe.
A team sport: multidisciplinary collaboration
No one can care for EB children alone. I work as part of a wider team with dermatologists, consultants, clinical nurse specialists (CNS) and EB nurses, anaesthetists, physiotherapists, psychologists, speech language and occupational therapists, social workers and a clinic coordinator. Every single person plays a vital role in making this team work; this, of course, includes our dental team. For me, that includes the dental consultant, a specialist dentist, our brilliant hygienist Julia, and me.
Together, we create holistic care plans. Julia’s role, in particular, is vital. Her calm, preventative care helps many children avoid more complex treatments, and in the background, our CNS coordinate everything from hospital visits to home-based care.
Quiet victories
What I’ve learned from my work includes far more than just clinical knowledge – it’s deeply personal. These children, often in daily pain, show extraordinary courage. Their parents, often sleep-deprived and emotionally stretched, still manage to smile and say ‘thank you’. Without exaggeration, I can say that I am constantly humbled by their resilience.
There’s a young girl we’ve worked with for years who once whispered, “I only open my mouth for you and Julia.” That moment of openness and trust has stayed with me ever since. It reminded me that technical skill matters, but trust, consistency, and kindness are just as important. This job is demanding, and it can be heart-breaking. But it is also deeply rewarding. Every smile we protect, every tear we help avoid, is a quiet victory.