Frequently Asked Questions

Can you tell by my baby’s wounds what type of EB this is?

No. A medical professional can give you an educated guess as to what type of EB your child has, but there have been many cases of these initial guesses being incorrect.

Think of all the symptoms that happen in an EB newborn as moving within each of the circles below- many symptoms are common in one form, but there is overlap of all the main forms of EB. Because of the overlap, the clinical picture cannot give the whole answer. Only a skin biopsy can confirm the type of EB a child has.

Should I wrap my baby’s fingers individually?

It is incredibly difficult to individually wrap a newborn’s fingers separately, and attempting to do so may actually cause more damage to the baby’s hands.

You may need to wrap the hands to protect your child from additional damage. Consider adding a ball of gauze impregnated with lubricant (ie white petroleum) to the palm of the hand so that the baby’s fingertips cannot rub on the base of the palm, causing damage.

Which is better for my baby, cloth diapers or disposables?

Some babies with EB do well with disposable diapers that are slightly larger and have the elastic cut out. Others do well with microfiber cloth diapers that wick moisture away from the skin. The most important thing is to ensure that urine is being absorbed and not sitting against the skin, causing breakdown.

Can I breastfeed my baby?

Some moms have been successful breastfeeding an EB baby. The things to consider are the calories your baby needs to heal and grow and the potential of damage to the baby’s mouth and lips that can occur during breastfeeding. If the nutritionist you work with says the baby can get enough calories, and the baby’s mouth tolerates breastfeeding, then you can certainly do so.

Is it okay to use a pacifier?

Some individuals believe the risk of oral damage is too high to allow use of a pacifier in an EB newborn. With that said, a pacifier can often be helpful in pain management during painful events such as dressing changes. Each family needs to weigh the risks and the benefits before deciding on pacifier use.

What is the right way to wrap my baby’s wounds?

There is no “right” or “perfect” way to dress EB wounds; many families have had success with a wide variety of methods of wrapping and types of medical products. It is important to have a primary contact layer, a secondary layer for padding and an outer layer to secure the dressing in place.

Additionally, some families find benefit from wrapping some “high risk” areas even when there are no wounds, in order to prevent damage.

Will my baby get better with age?

Some children with EB do improve with age, but for others the opposite is true. Unfortunately, it is not always possible to determine the prognosis for a child based on the diagnosis within the EB spectrum.

My baby wiggles and rubs the back of his head on the sheet. I think he is itchy. What can I do?

Itching is a common problem in EB. Using an emollient like white petroleum and keeping the skin moist can help. Some parents will also use a cool compress to reduce itching, but if symptoms persist, you can discuss medication options with your physician.

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