Hello everyone. My name is Lorri, and my husband, children and I live in Edmonton, Alberta, Canada. I am the mother of a teenage daughter with EHK. I am so happy to say that I just found this BB. You all seem like such a wonderful group of people and I an happy that my daughter now has a group of people in a similar situation to hers, that she can communicate with.
When I was 19 I married a man with EHK. During my first pregnancy I was told there was a 50-50 chance of the baby inheriting EHK. In December of that year I gave birth to a beautiful baby boy with normal skin. We were told however, that he would need genetic testing later in life to see if he was a carrier. Almost a year and a half later I gave birth to a beautiful little girl, who looked normal except for the milky white appearance of the soles of her feet and palms of her hands. The doctors and nurses at our small town hospital (outside of Vancouver, BC at the time) had never seen this before. When Kady was 11 hours old she developed blisters in her diaper area. The Head Nurse and I poured through the hospitals medical books looking for an explanation (my ex-husband's Mother said he had blisters as a baby but it was mis-diagnosed at the time as Ritter's Disease). We found out it was blistering common with Ichthyosis. The next morning Kady's skin started coming off in sheets, leaving behind very red, raw skin. Fearing infection, her doctors decided to send her by amulance to Vancouver Children's Hospital. They had to shave her beautiful head of dark hair to put in the IV (which took three tries so most of the hair was shaved). I was able to hold and nurse her for a few minutes until the Ambulance Attendants arrived to whisk my baby off. I was told at the time that she had a 50-50 chance of survival. I was scared out of my mind. Having had a C-Section, I was still confined to the hospital but, allowed out on a day-pass to travel to Vancouver Children's Hospital to see her the next day. When I arrived, Kady was in the Neonatal ICU, in isolation, in an incubator. The appearance of her skin had worsened overnight. At least 50% of her skin had come off by now, and she was red all over. The nurses told me they were scared because every time they tried to change the dressings on Kady, more skin would come off. I washed up, slipped on a gown, hat, mask and gloves and stepped into her room, reached my hand into her incubator and told her how much I loved her, how beautiful she was, and that she was a very strong little girl who was going to come through this fine. A nurse then came in to help me remove her from the incubator so that I could hold and nurse her. I prayed the whole time, and for days later, until I was told (about a week later) that she was strong enough to be transported back (by ambulance again) to our smaller local hospital she was born in. When she arrived there, she was placed in an incubator, in a small isolation room off the main nursery. At this time, our 17 month old son was allowed to come visit (after scrubbing, and putting on his own gown and mask of course-infection was still a possibility). Kady remained in hospital for another week and was then allowed to come home. For the next six weeks I could not used disposable diapers on her, or even wrap cloth ones around her. To do so would cause skin to fall off. While she was an infant I used glycerin, rose water and vaseline on her skin. The skin seemed to thicken on her knees when she learned to crawl, and by the time she was a year old, all the flexural creases (hands, feet, kees, neck, underarms, backs of knees, elbows), as well as her scalp all showed signs of EHK. Regardless, she was an adorable baby with a huge smile and bubbly personality, whom everyone commented on how beautiful she was. When she was 11 months old I entered her in a "Beautiful Baby" contest, and she won first place. When her win was announced, I told the judges what a self-confidence booster this would be for her when she is a bit older, due to the EHK. They had no idea what I was speaking about and said they didn't notice anything abnormal about her in her pictures.
Of course, as time has gone by the skin has become thicker and darker in some areas. When Kady has a bath or goes swimming the EHK affected skin turns snow white (embarassing for her even now), and although thick the skin is easily knocked completely off, leaving behind very raw, and sometimes bleeding skin underneath. When she was about 7 years old, she had a large piece come off the back of her heel, and she almost passed out when she looked at it.
Kady is now almost 15 years old and still is a beautiful girl, inside and out. When she was a tiny baby, I feared for her future. I was afraid people would be rude and mean. I never wanted to see my daughter cry, or be left out in any way with friends. That has almost never been the case. When she started preschool, and each year after that for the next six years or so, I would meet the teacher and children, explain Kady's condition, and that it is not contagious - rather, that this was just a difference that she was born with, just each of us are born with differences. Kady has always had an abundance of friends, and always been popular but, I do not credit myself for that. I credit Kady's bubbly personality, her love of life, her wonderful sense of humor, her strong sense of self-worth, her contagious smile, her loyalty to friends, and her sparkling friendly eyes and attitude.
Kady is in Grade 10 now and has already had two boyfriends this year. The first of which was a very popular boy. Kady, still showing her sense of self-worth, dumped him like a hot potatoe when he acted, shall we say, less than the gentleman he should have been. You go girl!!!
Wow, this has been a long post! I have spoken here as a mother but, I think it would be more interesting for everyone to hear this story from Kady's point of view, so in the next few days I will have Kady herself post a message to everyone. Although she is a strong girl, she knows no one her own age with EHK, and I know she will feel at home with everyone on this BB, an no doubt get some valuable insight, and advice. Thanks for listening to this very proud mother!