Seeing blisters on your newborn’s skin is deeply upsetting. Most parents’ first thought is that something they did caused it. It is important to know that this is almost never the case. In many babies, blisters that appear after the gentlest touch or friction point to a rare inherited skin condition called epidermolysis bullosa (EB).
This guide explains what EB is, why other conditions can look similar, how doctors confirm the diagnosis, how to care for your baby’s skin, and where families can find support.
What is epidermolysis bullosa?
Epidermolysis bullosa is a group of inherited conditions that make the skin so fragile that it blisters and tears easily. The cause is a change in the genes that make the proteins holding the layers of skin together. Without enough of these proteins, even a small amount of rubbing, pressure or heat can cause the layers to separate and fill with fluid.
In some children, the lining of the mouth, food pipe and other internal surfaces can blister too. Because the skin is as delicate as a butterfly’s wings, children with EB are often called “butterfly children.”
EB is not contagious, and it is not caused by anything the parents did during pregnancy or after birth. It is a genetic condition.
Why does my baby have blisters? The main types of EB
Doctors group EB into four main types, based on which layer of skin the blistering happens in. There are more than 30 subtypes in total.
EB simplex (EBS): The most common type, with blisters forming in the top layer of skin. It is usually inherited from one parent and is often milder. Changes in the keratin 5 and keratin 14 genes are the usual cause.
Junctional EB (JEB): Blisters form where the top layer attaches to the layer below. It is inherited from both parents and is usually severe. Several genes can be involved, including those for laminin-332, collagen XVII and integrin beta 4.
Dystrophic EB (DEB): Blisters form in the upper part of the deeper skin layer, caused by changes in the COL7A1 gene (type VII collagen). It can be inherited from one parent (dominant, usually milder) or from both parents (recessive, usually more severe).
Kindler syndrome: A very rare type with blistering at several layers of the skin, often with sensitivity to sunlight. It is caused by changes in the FERMT1 gene.
The severity varies widely. Some types are mild and improve with age. Others cause serious, lifelong problems. A precise diagnosis is the only way to know what to expect.
Blisters in newborns: not always EB
Blisters in a newborn can have other causes, and some of them are treatable infections. Doctors need to rule these out quickly:
Bullous impetigo, a bacterial skin infection
Staphylococcal scalded skin syndrome, a bacterial infection that makes skin peel
Herpes simplex virus infection
Other genetic skin conditions, such as epidermolytic ichthyosis and incontinentia pigmenti
Severe skin drug reactions such as Stevens-Johnson syndrome
Because EB can look like these conditions, it is sometimes missed in the first days of life. In one case reported from India, a newborn with extensive skin peeling was first treated for infection, and only a skin biopsy later showed junctional EB. This is why any newborn with blisters should be seen urgently by a paediatrician or newborn specialist, and ideally a dermatologist.
Signs that may point to EB
Blisters or open areas present at birth or appearing in the first days
Blisters in places that rub, such as the feet, hands, nappy area, elbows and knees
New blisters after normal handling, dressing or nappy changes
Blisters inside the mouth, trouble feeding or a hoarse cry
Thin or missing patches of skin, and nails that are thickened or missing
A family member with similar skin problems (though it can also be the first case in a family)
How is EB diagnosed?
Examination and family history: The doctor examines the skin and mucous membranes and asks about relatives with blistering. The pattern of inheritance can suggest the likely type.
Genetic testing: This is now the preferred way to confirm EB and identify the exact type and gene. It can use a gene panel or exome or genome sequencing.
Skin biopsy: A tiny skin sample can be examined with special techniques (immunofluorescence mapping and electron microscopy). It is mainly used when genetic testing is not available or the result is unclear. A recent study found that clinical diagnosis followed by rapid genetic testing can be more accurate than biopsy in many infants.
Genetic testing also lets the family understand the chance of EB in future pregnancies. Genetic counselling helps parents decide on options such as prenatal testing. You can read our guide on why early diagnosis matters in rare diseases to see how a timely answer changes care.
Caring for a baby with EB
The main goals of EB care are to prevent new blisters, heal existing wounds, prevent infection, control pain and give the best nutrition. Your care team will tailor this to your baby’s type. These principles are widely recommended:
Handle gently. Newborns with EB need different handling from other babies, and your team will show you safe ways to lift and hold your baby. Held with confidence, babies still get the comfort and bonding they need.
Avoid friction. Use soft, non-rough bedding and clothing, and be careful when dressing, bathing and changing nappies.
Never use sticky tapes or adhesive plasters on the skin. Use soft, non-stick dressings that do not stick to wounds.
If a dressing is stuck, do not pull it off. Soak it with lukewarm water, or use a silicone-based adhesive remover advised by your team.
Watch for infection. Redness, swelling, increasing pain, warmth, pus or a sick-looking baby need urgent medical review.
Plan feeding carefully. Mouth blisters can make sucking painful. Specially designed feeding bottles and dietitian support can help your baby gain weight and heal.
Treat pain. Pain in EB is constant and gets worse during dressing changes. Ask your team about a pain plan.
Ask how to manage large blisters. Your nurse or dermatologist will teach you how to do this safely, so please do not burst blisters at home until you have been shown.
Best results usually come from a team that includes a dermatologist, paediatrician, specialist nurse, dietitian and pain specialist.
Are there treatments for EB?
At present there is no cure, and daily wound care, bandaging and pain relief remain the base of treatment. But new treatments are arriving:
Vyjuvek is a gene therapy gel applied to wounds in dystrophic EB. It delivers a working copy of the COL7A1 gene to skin cells and was approved in the United States in 2023.
Filsuvez, a gel made from birch bark extract, was approved in the United States in late 2023 for wounds in dystrophic and junctional EB, for patients 6 months and older.
Zevaskyn is a gene-corrected skin cell therapy approved in the United States for wounds in recessive dystrophic EB.
These are approved in other countries, and their availability, cost and eligibility in India can be different. A genetic diagnosis is usually the first step to finding out whether a child qualifies for a treatment or a clinical trial. Please speak to your specialist about what is available.
Will my baby get better with age?
It depends on the type. Some children with milder forms of EB improve as they grow, and others live with more severe, lifelong symptoms. This is why getting the exact type through genetic testing early is so valuable. It helps your team plan care and tells you what to expect.
You are not alone: support for families
A diagnosis of EB can feel isolating, especially in a country where few doctors have seen it. Support organisations, specialist nurses and other families can make a big difference. DEBRA International, the global network for EB, runs an initiative called EB Without Borders, which supports patients, families and doctors in countries that do not yet have a national DEBRA group.
Healing Wings Foundation helps families find specialists, understand their options and access support. You can read about what to do after a rare disease diagnosis, learn about our rare disease care programme and see how our patient advocacy and support team can help.
What to do right now if your baby has blisters
Take your baby to a paediatrician or newborn unit today. Do not wait.
Avoid rubbing, and do not use tapes, adhesive plasters or sticky dressings on the skin.
Handle your baby gently and support the whole body when lifting.
Take clear photos of the blisters to show the doctor, and note when they started.
Write down any family history of blistering or skin fragility.
Ask for a referral to a dermatologist and for genetic testing.
Frequently Asked Questions
1. What causes blisters on a newborn baby?
Newborn blisters can be caused by infections such as bullous impetigo, staphylococcal scalded skin syndrome or herpes simplex, by other skin conditions, or by inherited conditions such as epidermolysis bullosa. A doctor must examine your baby urgently to find the cause.
2. What is epidermolysis bullosa?
It is a group of inherited conditions in which the skin is so fragile that it blisters and tears with minimal friction. It is caused by changes in genes that make the proteins holding the skin layers together.
3. Is epidermolysis bullosa contagious?
No. EB is genetic. It cannot spread from person to person through touch, and nothing the parents did caused it.
4. Why is epidermolysis bullosa called “butterfly skin”?
Children with EB have skin as delicate as a butterfly’s wings, so they are often called “butterfly children.”
5. How is epidermolysis bullosa diagnosed?
Doctors examine the skin and ask about family history, and then confirm the type with genetic testing. A skin biopsy is used in some cases, particularly when genetic testing is not available or not conclusive.
6. Can EB be cured?
There is currently no cure. Care focuses on protecting the skin, healing wounds, preventing infection, controlling pain and good nutrition. New gene and cell-based therapies and wound gels have been approved in some countries for certain types.
7. Will my baby grow out of it?
Some milder types improve with age, while severe types last for life. The exact type, which genetic testing identifies, shows what to expect.
8. Can I hold and cuddle my baby?
Yes. Babies with EB need affection and bonding like any other baby. Ask your care team to show you the safest way to hold your baby, and avoid pulling or rubbing the skin.
9. Will my next baby also have EB?
It depends on the type and how it is inherited. In recessive types both parents carry a gene change without symptoms, and in dominant types one parent may have it, or the change may be new in the baby. A genetic counsellor can explain the chance in your family and discuss testing options in pregnancy.
10. Where can families get help in India?
Specialist paediatric dermatology centres, genetic counselling services and patient support groups can help. DEBRA International’s EB Without Borders also supports families and doctors in countries without a national group. Healing Wings Foundation works with families on exactly this, and you can contact our team for guidance.
References
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), NIH: Epidermolysis bullosa overview.
National Organization for Rare Disorders (NORD): Epidermolysis bullosa.
Merck Manual (Professional Version): Epidermolysis bullosa.
GeneReviews, National Center for Biotechnology Information: Junctional epidermolysis bullosa.
DEBRA of America and Cincinnati Children’s EB Center: Diagnosis and care of the newborn with epidermolysis bullosa.
DEBRA UK: The science behind diagnosing types of EB.
British Journal of Dermatology: Accuracy of clinical diagnosis compared with immunofluorescence and electron microscopy in children with inherited epidermolysis bullosa (retrospective cohort study).
Cutis, 2022: Blistering lesions in a newborn (epidermolysis bullosa).
Indian Pediatrics, 2018: Junctional epidermolysis bullosa in a neonate.
DEBRA of America: How to care for newborns with epidermolysis bullosa.
Children’s Hospital Colorado: Epidermolysis bullosa parents and caregivers guide.
NHS Greater Glasgow and Clyde: Epidermolysis bullosa (EB) care of neonates, based on 2024 British Journal of Dermatology clinical practice guidelines.
Children’s Hospital of Philadelphia (CHOP): Gene therapy for epidermolysis bullosa.
EB Research Partnership: FDA approval of Vyjuvek for dystrophic epidermolysis bullosa, 2023.
DEBRA International: EB Without Borders.
Disclaimer: This article is for general awareness and does not replace advice from a qualified doctor. If your newborn has blisters, fever, poor feeding or looks unwell, please seek medical care immediately.
