Baby Was Born Happy and Healthy, 3 Days Later His Skin Started To Change

U.S.NewsPoliticsAI PoliticsTechFact CheckSportsGlobalIran WarRussia-UkraineMiddle EastChina And AsiaLive BlogBetter PlanetAll World NewsLifestyleFamily & ParentingEntertainmentTravelPetsAutomotiveRelationshipsScienceHealthPersonal FinanceBetter WorkplacesReaders ChoiceOpinionMy TurnAll OpinionRankingsHealthCorporate ResponsibilityFinanceProductsEducationWorkAll RankingsWatchThe 1600The Royal ReportUnconventionalFrom The PaddockNewsmakersSocialFacebookInstagramYouTubeRedditTikTokTwitter/XExtraNewslettersDare to DreamEventsEssaysPodcastsVantageInsightsMagazineCEO CircleAnnouncementsLeadershipDev Pragad When Chloe Birkett, 25, welcomed her son Renley into the world on May 5, it marked the culmination of an emotional, difficult journey. Birkett suffered two miscarriages before becoming pregnant with Renley and ultimately gave birth via an emergency C-section. Despite all the difficulties that had come before, holding her son for the first time was a feeling unlike any other. “He was everything we could've ever wanted,” Birkett told Newsweek. That feeling has never gone away, despite everything that has followed. Renley was born happy and healthy, but three days after his arrival, Birkett began to notice something. “He started with blisters on his feet,” she said. “We got dismissed [by the doctors], and they told us it was probably just friction from the towels when he was born.” However, everything changed a few days later after Renley, who is based in Lancashire, England, underwent the standard newborn blood spot test. Known colloquially as the “heel-prick test,” it's a simple screening procedure designed to check for several rare and sometimes serious health conditions. Birkett didn't think much of the test at the time, but doctors deemed the results concerning enough to rush them straight to the hospital. “We stayed in the hospital for just over a week, and that's when specialists came to see us and said they thought it could be epidermolysis bullosa (EB),” Birkett said. “Three weeks later, we got his diagnosis.” EB is a group of rare inherited disorders that cause the skin to be extremely fragile. This means even minor friction or bumps can result in painful blisters and wounds. The symptoms include blistering, scarring, skin tears, and the thickening of skin and nails. In more severe cases, blistering inside the mouth, throat, or digestive tract can occur. EB is a rare condition, affecting an estimated 1 in 50,000 people in the United States. There are four main variants: epidermolysis bullosa simplex (EBS), the most common form; junctional EB (JEB); dystrophic EB (DEB); and Kindler syndrome. In each case, the severity of the condition can range from mild to life-threatening depending on the subtype. Renley was ultimately diagnosed with EB simplex. “EB is caused by gene defects,” Birkett said. “Me and my partner were not carriers of EB, which means it happened spontaneously.” Although EB is usually inherited, some cases occur spontaneously as the result of a new genetic mutation, meaning a child can develop the condition despite having no family history of the disorder. Though Birkett acknowledges that EB was a condition they were aware of and had discussed before Renley's official diagnosis, the news nevertheless left them stunned. “It was a massive shock, but we're getting there with it all now,” she said. “We know how to try and control it and what makes it worse.” Parenting a child with EB comes with its own unique challenges, particularly when caring for an infant like Renley. “With him being so young, we're constantly having to bathe him, put creams on, pop blisters, dress his wounds, and keep an eye out for infections,” Birkett said. “You're constantly on the lookout for something! We have to be careful when hugging him, changing diapers, getting him dressed, bathing him, and just going about normal day-to-day life.” There's no treatment for Renley's condition other than effectively managing his wounds. “Renley could possibly need a wheelchair for walking long distances because his feet can break out quite badly,” Birkett said. “It can be managed, but it's hard because a blister can appear anywhere.” Despite the challenges that lie ahead, Birkett is focusing on the positives that come with being Renley's mom and is determined to provide him with a happy childhood. “There isn't enough funding for EB,” she said. “We decided to share our story in the hope that it will lead to more funding and, hopefully, one day a cure or at least a treatment.” Contact Newsweek editors on this story: Marc Vargas and Gray R. ThomasBy Jack BeresfordSenior Reporter

0ShareNewsweek is a Trust Project memberSee more of our trusted coverage when you search.Prefer Newsweek on Googleto see more of our trusted coverage when you search.When Chloe Birkett, 25, welcomed her son Renley into the world on May 5, it marked the culmination of an emotional, difficult journey.

Birkett suffered two miscarriages before becoming pregnant with Renley and ultimately gave birth via an emergency C-section.

Despite all the difficulties that had come before, holding her son for the first time was a feeling unlike any other. “He was everything we could’ve ever wanted,” Birkett told Newsweek. That feeling has never gone away, despite everything that has followed.

Renley was born happy and healthy, but three days after his arrival, Birkett began to notice something. “He started with blisters on his feet,” she said. “We got dismissed [by the doctors], and they told us it was probably just friction from the towels when he was born.”

However, everything changed a few days later after Renley, who is based in Lancashire, England, underwent the standard newborn blood spot test. Known colloquially as the “heel-prick test,” it’s a simple screening procedure designed to check for several rare and sometimes serious health conditions.

Birkett didn’t think much of the test at the time, but doctors deemed the results concerning enough to rush them straight to the hospital. “We stayed in the hospital for just over a week, and that’s when specialists came to see us and said they thought it could be epidermolysis bullosa (EB),” Birkett said. “Three weeks later, we got his diagnosis.”

EB is a group of rare inherited disorders that cause the skin to be extremely fragile. This means even minor friction or bumps can result in painful blisters and wounds. The symptoms include blistering, scarring, skin tears, and the thickening of skin and nails. In more severe cases, blistering inside the mouth, throat, or digestive tract can occur.

EB is a rare condition, affecting an estimated 1 in 50,000 people in the United States. There are four main variants: epidermolysis bullosa simplex (EBS), the most common form; junctional EB (JEB); dystrophic EB (DEB); and Kindler syndrome. In each case, the severity of the condition can range from mild to life-threatening depending on the subtype.Renley was ultimately diagnosed with EB simplex. “EB is caused by gene defects,” Birkett said. “Me and my partner were not carriers of EB, which means it happened spontaneously.” Although EB is usually inherited, some cases occur spontaneously as the result of a new genetic mutation, meaning a child can develop the condition despite having no family history of the disorder.

Though Birkett acknowledges that EB was a condition they were aware of and had discussed before Renley’s official diagnosis, the news nevertheless left them stunned. “It was a massive shock, but we’re getting there with it all now,” she said. “We know how to try and control it and what makes it worse.”

Parenting a child with EB comes with its own unique challenges, particularly when caring for an infant like Renley. “With him being so young, we’re constantly having to bathe him, put creams on, pop blisters, dress his wounds, and keep an eye out for infections,” Birkett said. “You’re constantly on the lookout for something! We have to be careful when hugging him, changing diapers, getting him dressed, bathing him, and just going about normal day-to-day life.”

There’s no treatment for Renley’s condition other than effectively managing his wounds. “Renley could possibly need a wheelchair for walking long distances because his feet can break out quite badly,” Birkett said. “It can be managed, but it’s hard because a blister can appear anywhere.”

Despite the challenges that lie ahead, Birkett is focusing on the positives that come with being Renley’s mom and is determined to provide him with a happy childhood. “There isn’t enough funding for EB,” she said. “We decided to share our story in the hope that it will lead to more funding and, hopefully, one day a cure or at least a treatment.”

Contact Newsweek editors on this story: Marc Vargas and Gray R. Thomas