Medical Conditions

My Baby Has Epidermolysis Bullosa (EB)

Medically reviewed by Dr. Michael Okonkwo, MD, FAAP · Board-Certified Neonatologist

Content reviewed against published NIH, NIH, Children's Hospital guidelines

Editorial policy

Last reviewed:

If your baby has been diagnosed with or you suspect has epidermolysis bullosa (eb), here is what the evidence says.

The short answer

Epidermolysis bullosa (EB) is a group of genetic disorders that cause the skin to be extremely fragile, forming blisters and wounds with minimal friction or trauma. The severity varies widely by subtype. EB simplex (the most common and mildest form) primarily affects the hands and feet. Junctional and dystrophic EB are more severe and can affect the entire body, mouth, and internal surfaces. Wound care is the cornerstone of management. Children with EB are sometimes called "butterfly children" because their skin is as fragile as butterfly wings. Gene therapy and protein-replacement treatments are emerging areas of research and early clinical use.

Key takeaways

  • Epidermolysis bullosa (EB) is a group of genetic disorders that cause the skin to be extremely fragile, forming blisters and wounds with minimal friction or trauma. The severity varies widely by subtype. EB simplex (the most common and mildest form) primarily affects the hands and feet. Junctional and dystrophic EB are more severe and can affect the entire body, mouth, and internal surfaces. Wound care is the cornerstone of management. Children with EB are sometimes called "butterfly children" because their skin is as fragile as butterfly wings. Gene therapy and protein-replacement treatments are emerging areas of research and early clinical use.
  • Usually normal when: Your baby has EB simplex with blistering mainly limited to hands and feet that heals without scarring
  • Call your doctor if: A blister or wound appears infected: increasing redness around the wound, pus, foul smell, warmth, or your baby has a fever - wound infections can become serious quickly in EB
  • Varies by age — see the age-by-age breakdown below
“Fever itself is not an illness — rather, it is a sign or symptom that the body is fighting an infection. Fever stimulates certain defenses, such as the white blood cells, which attack and destroy invading bacteria.”
— Fever and Your Child, American Academy of Pediatrics (AAP)

Parents everywhere have the same worry. You are doing the right thing by looking into it.

What Parents Should Know

According to NIH, Children's Hospital guidelines, epidermolysis bullosa (EB) is a group of genetic disorders that cause the skin to be extremely fragile, forming blisters and wounds with minimal friction or trauma. The severity varies widely by subtype. EB simplex (the most common and mildest form) primarily affects the hands and feet. Junctional and dystrophic EB are more severe and can affect the entire body, mouth, and internal surfaces. Wound care is the cornerstone of management. Children with EB are sometimes called "butterfly children" because their skin is as fragile as butterfly wings. Gene therapy and protein-replacement treatments are emerging areas of research and early clinical use. At 0-1 month, eB may be apparent at birth or within the first days of life when blisters appear from the friction of delivery, clothing, or handling. In severe forms, large areas of skin may be absent at birth (aplasia cutis). A skin biopsy and genetic testing confirm the specific type of EB. Gentle handling is crucial - lancing blisters with a sterile needle to drain fluid (without removing the blister roof) prevents them from spreading. Non-stick dressings and silicone-based bandages protect the skin. Your NICU or dermatology team will teach you wound care techniques before discharge. It is generally considered normal when your baby has EB simplex with blistering mainly limited to hands and feet that heals without scarring. However, you should contact your pediatrician promptly if a blister or wound appears infected: increasing redness around the wound, pus, foul smell, warmth, or your baby has a fever - wound infections can become serious quickly in EB.

Sources: [1], [2], [3]

Normal vs. Concerning

Usually Normal
Worth Discussing
Your baby has EB simplex with blistering mainly limited to hands and feet that heals without scarring
A blister or wound appears infected: increasing redness around the wound, pus, foul smell, warmth, or your baby has a fever - wound infections can become serious quickly in EB
You have an established wound care routine that is keeping blisters under control
Your baby has extensive new blistering or skin loss after a minor event
Your baby is feeding well and gaining weight appropriately
Your baby is unable to feed due to oral blistering and is showing signs of dehydration (fewer wet diapers, dry mouth, sunken soft spot)
Your baby is being followed by a dermatologist experienced in EB management
Your baby has difficulty swallowing, gagging, or refuses feeds, which could indicate esophageal involvement

When to Seek Immediate Care

  • A blister or wound appears infected: increasing redness around the wound, pus, foul smell, warmth, or your baby has a fever - wound infections can become serious quickly in EB
  • Your baby has extensive new blistering or skin loss after a minor event
  • Your baby is unable to feed due to oral blistering and is showing signs of dehydration (fewer wet diapers, dry mouth, sunken soft spot)
  • Your baby has difficulty swallowing, gagging, or refuses feeds, which could indicate esophageal involvement
  • Your baby has eye redness, pain, or discharge, as EB can affect the cornea and requires urgent ophthalmologic evaluation

By Age

What to expect by age

0-1 month

EB may be apparent at birth or within the first days of life when blisters appear from the friction of delivery, clothing, or handling. In severe forms, large areas of skin may be absent at birth (aplasia cutis). A skin biopsy and genetic testing confirm the specific type of EB. Gentle handling is crucial - lancing blisters with a sterile needle to drain fluid (without removing the blister roof) prevents them from spreading. Non-stick dressings and silicone-based bandages protect the skin. Your NICU or dermatology team will teach you wound care techniques before discharge.

1-6 months

Daily wound care becomes a central part of life for families of babies with EB. Bath time uses lukewarm water, and dressings are changed carefully using non-adherent materials. Pain management during dressing changes is important - your doctor may prescribe pain medication to give before wound care. Feeding may be challenging if blisters affect the mouth - soft nipples, special bottle techniques, and monitoring for adequate weight gain are important. Nutritional support may be needed for severe cases.

6-12 months

As your baby becomes more mobile (rolling, crawling), new friction areas may develop blisters. Protective clothing, padded surfaces, and careful childproofing help minimize trauma. Occupational therapy can help with adaptive strategies. For EB simplex, blistering may improve somewhat as the skin toughens with age. For more severe forms, ongoing wound care and nutritional support are essential. Iron and protein supplementation may be needed due to chronic wound healing demands.

1-3 years

Toddlers with EB need careful monitoring for complications: scarring (in dystrophic EB) can lead to fusion of fingers and toes (pseudosyndactyly), esophageal strictures (narrowing of the swallowing tube), and contractures. Physical and occupational therapy help maintain mobility and hand function. Dental care is important as EB can affect the teeth and oral mucosa. Nutritional needs remain high due to ongoing wound healing. Social support and respite care for families are valuable.

3 years+

Long-term management varies significantly by EB type. EB simplex patients often have a good quality of life with blistering that may improve over time. Junctional and dystrophic forms require multidisciplinary care including dermatology, gastroenterology, nutrition, orthopedics, ophthalmology, and psychosocial support. Gene therapy (such as Vyjuvek/beremagene geperpavec, the first FDA-approved gene therapy for dystrophic EB) and protein replacement therapies represent exciting advances. Clinical trials continue to expand treatment options.

What to Tell Your Pediatrician

  • Describe when you first noticed has epidermolysis bullosa (eb) and how it has changed over time.
  • Note your baby's current age and which age-specific patterns you are seeing.
  • Mention if you notice blistering is worsening or affecting new areas of the body.
  • Mention if your baby is having difficulty feeding or seems to have mouth pain during feeds.
  • Let your doctor know if you have noticed any related concerns, such as changes in feeding, sleep, or movement patterns.
  • Bring a list of any questions or observations you want to discuss at the appointment.

What Should You Do?

When to take action

Probably normal when...
  • Your baby has EB simplex with blistering mainly limited to hands and feet that heals without scarring
  • You have an established wound care routine that is keeping blisters under control
  • Your baby is feeding well and gaining weight appropriately
  • Your baby is being followed by a dermatologist experienced in EB management
  • Your baby is meeting developmental milestones despite skin fragility
Mention at your next visit when...
  • You notice blistering is worsening or affecting new areas of the body
  • Your baby is having difficulty feeding or seems to have mouth pain during feeds
  • You see signs of finger or toe fusion developing (webbing)
  • You need help with wound care techniques or pain management
  • You are interested in clinical trials or new therapies for EB
Act now when...
  • A blister or wound appears infected: increasing redness around the wound, pus, foul smell, warmth, or your baby has a fever - wound infections can become serious quickly in EB
  • Your baby has extensive new blistering or skin loss after a minor event
  • Your baby is unable to feed due to oral blistering and is showing signs of dehydration (fewer wet diapers, dry mouth, sunken soft spot)
  • Your baby has difficulty swallowing, gagging, or refuses feeds, which could indicate esophageal involvement
  • Your baby has eye redness, pain, or discharge, as EB can affect the cornea and requires urgent ophthalmologic evaluation

What You Can Do at Home

  • Keep track of when you notice has epidermolysis bullosa (eb) — noting the time of day, duration, and any triggers can help your pediatrician.
  • Remember that your baby has EB simplex with blistering mainly limited to hands and feet that heals without scarring — this is generally within the range of normal.
  • At 0-1 month, focus on observation rather than intervention unless your pediatrician advises otherwise.
  • Follow any care instructions from your pediatrician. Keep a written log of symptoms to bring to appointments.
  • While monitoring at home, seek immediate care if a blister or wound appears infected: increasing redness around the wound, pus, foul smell, warmth, or your baby has a fever - wound infections can become serious quickly in EB.

Baby Blistering Rash (Fluid-Filled Blisters)

Fluid-filled blisters on a baby's skin can be caused by many things, including hand-foot-and-mouth disease, friction burns, insect bites, impetigo, chickenpox, or herpes simplex. While many causes are mild, blistering rashes in young babies or those accompanied by fever should be evaluated by a doctor to determine the cause and best treatment.

Baby's Skin Peeling Between Toes

Peeling skin between a baby's toes is usually caused by moisture, friction from shoes or socks, eczema, or normal newborn skin shedding. True athlete's foot (tinea pedis) is rare in babies and toddlers. In newborns, widespread skin peeling in the first few weeks is completely normal as the skin adjusts from the fluid environment of the womb. For persistent peeling, keep the area dry, use gentle moisturizer, and consult your pediatrician if it worsens or appears infected.

Milestone

Month-by-Month Development

Detailed monthly development guides from birth through 24 months.

Guide

When to Call the Doctor

General guide on when to call the pediatrician, visit urgent care, or go to the ER.

Frequently asked questions

Is has epidermolysis bullosa (eb) normal?
Epidermolysis bullosa (EB) is a group of genetic disorders that cause the skin to be extremely fragile, forming blisters and wounds with minimal friction or trauma. The severity varies widely by subtype. EB simplex (the most common and mildest form) primarily affects the hands and feet. Junctional and dystrophic EB are more severe and can affect the entire body, mouth, and internal surfaces. Wound care is the cornerstone of management. Children with EB are sometimes called "butterfly children" because their skin is as fragile as butterfly wings. Gene therapy and protein-replacement treatments are emerging areas of research and early clinical use.
When should I call the doctor about has epidermolysis bullosa (eb)?
A blister or wound appears infected: increasing redness around the wound, pus, foul smell, warmth, or your baby has a fever - wound infections can become serious quickly in EB Your baby has extensive new blistering or skin loss after a minor event Your baby is unable to feed due to oral blistering and is showing signs of dehydration (fewer wet diapers, dry mouth, sunken soft spot)
When is has epidermolysis bullosa (eb) normal?
Your baby has EB simplex with blistering mainly limited to hands and feet that heals without scarring You have an established wound care routine that is keeping blisters under control Your baby is feeding well and gaining weight appropriately
What causes has epidermolysis bullosa (eb)?
Epidermolysis bullosa (EB) is a group of genetic disorders that cause the skin to be extremely fragile, forming blisters and wounds with minimal friction or trauma. The severity varies widely by subtype. EB simplex (the most common and mildest form) primarily affects the hands and feet. Junctional and dystrophic EB are more severe and can affect the entire body, mouth, and internal surfaces. Wound care is the cornerstone of management. Children with EB are sometimes called "butterfly children" because their skin is as fragile as butterfly wings. Gene therapy and protein-replacement treatments are emerging areas of research and early clinical use. Common explanations include: Your baby has EB simplex with blistering mainly limited to hands and feet that heals without scarring. You have an established wound care routine that is keeping blisters under control.
What should I mention to my pediatrician about has epidermolysis bullosa (eb)?
You should mention has epidermolysis bullosa (eb) at your next visit if: You notice blistering is worsening or affecting new areas of the body. Your baby is having difficulty feeding or seems to have mouth pain during feeds. You see signs of finger or toe fusion developing (webbing).
Is has epidermolysis bullosa (eb) normal at 0-1 month?
EB may be apparent at birth or within the first days of life when blisters appear from the friction of delivery, clothing, or handling. In severe forms, large areas of skin may be absent at birth (aplasia cutis). A skin biopsy and genetic testing confirm the specific type of EB. Gentle handling is crucial - lancing blisters with a sterile needle to drain fluid (without removing the blister roof) prevents them from spreading. Non-stick dressings and silicone-based bandages protect the skin. Your NICU or dermatology team will teach you wound care techniques before discharge.
Is has epidermolysis bullosa (eb) normal at 1-6 months?
Daily wound care becomes a central part of life for families of babies with EB. Bath time uses lukewarm water, and dressings are changed carefully using non-adherent materials. Pain management during dressing changes is important - your doctor may prescribe pain medication to give before wound care. Feeding may be challenging if blisters affect the mouth - soft nipples, special bottle techniques, and monitoring for adequate weight gain are important. Nutritional support may be needed for severe cases.
Should I go to the ER for has epidermolysis bullosa (eb)?
Seek emergency care if a blister or wound appears infected: increasing redness around the wound, pus, foul smell, warmth, or your baby has a fever - wound infections can become serious quickly in EB, or if your baby has extensive new blistering or skin loss after a minor event. When in doubt, call your pediatrician's after-hours line for guidance.
Does has epidermolysis bullosa (eb) go away on its own?
In many cases, has epidermolysis bullosa (eb) resolves on its own, especially when your baby has EB simplex with blistering mainly limited to hands and feet that heals without scarring. By 3 years+, long-term management varies significantly by EB type. EB simplex patients often have a good quality of life with blistering that may improve over time. Junctional and dystrophic forms require multidisciplinary care including dermatology, gastroenterology, nutrition, orthopedics, ophthalmology, and psychosocial support. Gene therapy (such as Vyjuvek/beremagene geperpavec, the first FDA-approved gene therapy for dystrophic EB) and protein replacement therapies represent exciting advances. Clinical trials continue to expand treatment options.
NIHNIHCHILDREN'S HOSPITAL

References

  1. [1]National Institutes of Health. Epidermolysis Bullosa. Genetic and Rare Diseases Information Center (GARD), 2024. NIH
  2. [2]National Institute of Arthritis and Musculoskeletal and Skin Diseases. Epidermolysis Bullosa. NIAMS, 2024. NIH
  3. [3]Cincinnati Children's Hospital. Epidermolysis Bullosa Center. Children's Hospital

Doctor Visit Checklist

Bring this checklist to your next pediatrician visit to discuss My Baby Has Epidermolysis Bullosa (EB).

Things to mention

  • Describe when you first noticed has epidermolysis bullosa (eb) and how it has changed over time.
  • Note your baby's current age and which age-specific patterns you are seeing.
  • Mention if you notice blistering is worsening or affecting new areas of the body.
  • Mention if your baby is having difficulty feeding or seems to have mouth pain during feeds.
  • Let your doctor know if you have noticed any related concerns, such as changes in feeding, sleep, or movement patterns.
  • Bring a list of any questions or observations you want to discuss at the appointment.

Observations to share

  • You notice blistering is worsening or affecting new areas of the body
  • Your baby is having difficulty feeding or seems to have mouth pain during feeds
  • You see signs of finger or toe fusion developing (webbing)

Urgent signs to report immediately

  • A blister or wound appears infected: increasing redness around the wound, pus, foul smell, warmth, or your baby has a fever - wound infections can become serious quickly in EB
  • Your baby has extensive new blistering or skin loss after a minor event
  • Your baby is unable to feed due to oral blistering and is showing signs of dehydration (fewer wet diapers, dry mouth, sunken soft spot)

My notes

From ismybabyalright.com — free, evidence-based baby health guides

All content follows our editorial policy and is reviewed against published clinical guidelines.

2,705 evidence-based guides6 authoritative medical sources5 medical advisory board members

Related Resources

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Bottom line

Most cases of has epidermolysis bullosa (eb) are normal. Talk to your pediatrician if a blister or wound appears infected: increasing redness around the wound, pus, foul smell, warmth, or your baby has a fever - wound infections can become serious quickly in eb.

Trust your instincts. If something feels wrong, reach out to your pediatrician. Worrying about your baby means you care — that is a good thing.

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Fluid-filled blisters on a baby's skin can be caused by many things, including hand-foot-and-mouth disease, friction burns, insect bites, impetigo, chickenpox, or herpes simplex. While many causes are mild, blistering rashes in young babies or those accompanied by fever should be evaluated by a doctor to determine the cause and best treatment.

Baby's Skin Peeling Between Toes

Peeling skin between a baby's toes is usually caused by moisture, friction from shoes or socks, eczema, or normal newborn skin shedding. True athlete's foot (tinea pedis) is rare in babies and toddlers. In newborns, widespread skin peeling in the first few weeks is completely normal as the skin adjusts from the fluid environment of the womb. For persistent peeling, keep the area dry, use gentle moisturizer, and consult your pediatrician if it worsens or appears infected.

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