Mom Reveals The Terrifying First Signs Of Her Baby’s Rare ‘Butterfly Skin’ Condition

A new mother expected the first moments with her baby to be filled with cuddles and the excitement of finally meeting him. Instead, within minutes of giving birth, Ciara Burnside noticed something was wrong with her newborn son.

When Ciara first saw Ralph on March 25, 2026, she spotted large red patches across his fingers and feet. Within hours, his skin had begun blistering across his body, and he was rushed into intensive care as doctors tried to understand what was happening.

The First Signs Appeared Almost Immediately After Birth

Ciara, 30, said her pregnancy had been “very straightforward.” She and her fiancé Lewis Archer, 29, had been “elated and terrified” when they discovered they were expecting their first child on August 13, 2025, and nothing during the pregnancy had prepared them for what happened after Ralph was born.

The first warning came when Ciara was finally able to see her newborn. She noticed large red patches covering his fingers and feet and immediately questioned the midwife about them. “There were big red patches on his fingers and on his feet and I remember saying to the midwife, ‘what’s wrong with him?’,” she recalled.

Ralph was then taken to a neonatal intensive care unit and placed inside a heated incubator. When Ciara was able to see her baby again later that same day, his condition had progressed rapidly. She said blisters had appeared “all over his body,” leaving the new parents facing a medical emergency they had never anticipated.

Doctors Quickly Introduced The Family To EB

The next day, a consultant gave Ciara and Lewis a leaflet explaining epidermolysis bullosa, commonly known as EB. A specialist from Great Ormond Street Hospital arrived the following day to explain more about the rare condition and told the couple that Ralph would need genetic testing to determine exactly which form he had.

The information they received was frightening. Ciara said doctors explained that some forms of EB can be extremely severe, including one subtype in which babies may not survive. For parents who had only just welcomed their son into the world, the uncertainty was devastating.

“They said to us there is a specific type where he may not survive. After that, my partner and I just shut down… we were crying and were very, very, upset,” Ciara said.

Ralph remained in hospital for 16 days before eventually being discharged. The family then had to wait for the genetic testing results, which would reveal more about why his skin was blistering so severely.

Genetic Tests Revealed A Rare Form Of The Condition

On May 21, Ciara and Lewis received the results they had been waiting for. The tests showed that both parents are silent carriers of a mutation in the COL17A1 gene, which causes intermediate junctional epidermolysis bullosa, or JEB.

For Ralph, the condition presents with extreme skin fragility across his body. The effects can extend beyond the immediate blistering, with the family told that he may develop alopecia, malformed fingernails and toenails, and irregular tooth enamel as he grows.

EB refers to a group of rare inherited disorders in which the skin can become extremely fragile. The condition has earned the nickname “butterfly skin” because affected skin can be as delicate as a butterfly’s wings, according to DEBRA UK. For Ralph’s parents, that fragility affects almost every part of his daily routine.

Even Basic Baby Care Requires Careful Planning

Ciara said changing Ralph’s nappy is a “two-person job” because he can kick his legs around. His parents cannot simply hold him down when he moves, since pressure or friction can cause his skin to break.

His daily care also includes medication for pain and acid reflux. Ciara said Ralph is “just as fragile internally” as he is externally, which means his parents have to think about what happens inside his body as well as the condition of his skin.

Feeding can be particularly difficult. The family lubricates the bottle teat with coconut oil in an attempt to reduce friction inside his mouth, although Ciara said this does not always prevent damage. When Ralph develops injuries in his mouth, his parents use a mouthwash typically used for chemotherapy patients to help reduce the pain.

On some occasions, feeding has taken more than an hour. Ciara said she and Lewis have had to syringe-feed Ralph by slowly dripping milk into his mouth when normal feeding becomes too painful.

His Parents Are Too Frightened To Give Him A Normal Bath

Something as ordinary as bath time has also become a major challenge for Ralph’s family. Ciara said she and Lewis are “too scared” to bathe him normally because of the possibility that contact with the water, their hands, or the movement involved could cause further damage.

Instead, they sponge-bathe him using a flannel or gauze while carefully cleaning his wounds and body. Even then, the process requires close attention because Ralph’s skin can blister or break from seemingly minor contact.

His parents also cannot leave him unattended for long periods. Even with soft mittens covering his hands, Ralph can accidentally rub his face and cause significant damage.

“Unlike most parents, we can’t really leave him unattended for more than a minute because, even with very soft mittens on, rubbing his face can cause significant damage incredibly quickly,” Ciara said.

That has changed the family’s entire routine. Playtime is heavily supervised, clothes are changed twice a day, and Ralph’s body is checked regularly for new injuries.

A Blister Can Continue Growing Without Treatment

The family has to watch for new blisters throughout the day because they can develop almost anywhere on Ralph’s body. Ciara said they can even appear underneath his nail beds, potentially causing his fingernails or toenails to fall off.

She explained that once a blister develops, it can continue spreading and increasing in size unless the fluid is released. That means Ralph’s parents have to respond quickly when they discover new damage rather than simply waiting for it to heal.

“If a blister comes up, it will just keep spreading and getting bigger, unless you pierce it and drain the fluid,” Ciara said.

The parents also face the difficult task of balancing necessary care with the risk that the care itself can cause pain or further skin damage. Every clothing change, nappy change and examination has to be approached with that in mind.

Leaving The House Has Become A Rare Event

The family’s concerns do not end inside their home. Ciara said they rarely leave the house because of the risks associated with heat and the possibility of damage from Ralph’s car seat.

That means ordinary family outings require considerably more planning than they would for most parents with a five-month-old baby. The family has to think about how Ralph will be positioned, how much pressure will be placed on his skin and whether the surrounding temperature could create additional problems.

Ciara said she and Lewis are also constantly aware that Ralph cannot simply be placed somewhere and left to play independently. His skin can be damaged quickly, even during moments that might otherwise seem harmless. The result is a level of supervision that has become part of everyday life for the family.

Doctors Say Ralph Could Face More Complications

While Ralph’s parents have been warned about the challenges ahead, they have also received some reassuring information about his prognosis. Ciara said doctors believe he will likely make it to adulthood because his condition is not considered the most severe form of EB.

There are still serious possibilities they have been told to prepare for. Ciara said doctors have warned that Ralph could eventually need a wheelchair because his feet were badly damaged from birth and may remain particularly fragile.

His hair and fingernails could also be affected as he grows older. The genetic condition may cause alopecia, malformed fingernails and toenails, as well as irregular tooth enamel.

The family has been told that they need to be proactive about preventing complications. However, Ciara said doctors cannot tell them exactly what Ralph’s future will look like.

“They can’t tell me much else, other than we have to be proactive in stopping complications early. We just have to take each day as it comes,” she said.

The Diagnosis Took A Heavy Mental Toll On His Mother

The physical demands of Ralph’s condition have been accompanied by an emotional toll for Ciara. She said she was in a “very bad space” mentally after his birth, and midwives contacted emergency mental health teams to provide support.

The first days were particularly difficult because the family did not know which subtype of EB Ralph had or what his prognosis would be. They were being asked to learn complex medical information while also coping with the possibility that their newborn might have a life-threatening condition.

Support from Great Ormond Street Hospital and DEBRA UK has since helped the family adjust to their new reality. Ciara has also spent “every spare minute” researching developments involving EB and connecting with other families affected by junctional EB.

Those connections have given her access to people who understand the practical difficulties that come with caring for a child whose skin can be damaged so easily.

The Family Is Already Looking Toward Ralph’s Future

Ciara and Lewis have said they would like to have another child in the future. Because both parents are silent carriers of the genetic mutation linked to Ralph’s condition, Ciara said they would explore IVF with genetic testing of embryos.

For now, their priority is learning everything they can about Ralph’s condition and protecting him from avoidable complications.

Ciara hopes researchers will eventually find a cure for EB. She also hopes that more effective treatments can be developed to make life easier for children like Ralph, whose families have to turn ordinary childhood routines into carefully managed medical tasks.

Ralph’s story shows just how dramatically a rare genetic condition can change the basics of caring for a newborn. For his parents, a simple cuddle, bath or trip outside now requires careful consideration because even gentle contact can leave their baby in pain.