KicKee Pants' EB Donation Campaign // Gunner King
It was the spring of 2011, I was 20 years old and my husband was 18. I was in nursing school and my husband Cody was working hard doing 2 jobs while I was a full time student. I found out I was pregnant in March of 2011 and like any new young parents would be, we were nervous but SO excited. We found out that we were having a boy and our excitement grew even more! We decided to name him Gunner Ray King. We got the nursery all fixed up in camo/forest animals, we got so many cute little outfits and shoes. Socks and bibs, sleepers and blankets. I soon after graduated nursing school at 35 weeks pregnant, and was schedule to take my state boards in January. We were ready, and all we needed now was for Gunner to be here. I had a completely healthy and uneventful pregnancy. I was 39 weeks and 3 days when I went into labor. It came on so fast and I progressed even faster. Gunner would be the first grandchild on both sides of the family. We had all our family and friends there at the hospital supporting us and so excited along with us.
It came time to push, and I was so nervous. Everyone left the room except Cody and I and our mothers. After the first few pushes, I heard my very experienced OB ask the nurse, "Do you see that?" I heard her say yes but didn't think anything about it. I only pushed for 30 minutes and our little boy was here, but he wasnt't breathing. He was covered in red blotches, but I thought it was just from birth. They immediately took him over to the incubator and suctioning him out and trying to get him to breathe. It seemed like forever, but we finally heard his cry. All of a sudden a whole team of nurses came in, I still hadn't seen or held Gunner. The OB asked me, "Is there any history of skin conditions in your family?" What a weird question I thought, I answered no and so did Cody. Then the OB said, "Well in all my years of practicing I have never seen anything like this, I can tell you that it is nothing that you did." WHAT IS HE TALKING ABOUT? They finally wrapped Gunner in a blanket and brought him to me. They hovered him over me and didn't let me touch him. He had missing skin on his cheeks and lips, he had scratches and missing skin from the catheter that was in me that scraped across his head. He had almost no skin on his hands and feet and ankles. His torso had splotches of missing skin as well. I immediately started crying. They whisked him away to the NICU and they started to fix me up.
Cody went with Gunner to the NICU. In the meantime a bunch of nurses and doctors came in from that hospital and also from another hospital in the same town that had a higher level NICU. They were transferring Gunner over there, they didn't know what was wrong with him. Cody came back in to the room and we just sat staring at the floor crying. I had just went through chilidbirth, was so nervous and excited, and now I had a feeling of sickness and emptiness. I had no baby in my arms. This wasn't at all like I had pictured it to be. I was discharged that next day and was able to go to see Gunner at the other hospital. We walked into his room and there were nurses and doctors all around him. The nurse said "I have seen a kiddo before with this and he gets around great with his powerchair and he lances his own blisters and dresses his own wounds himself!" What is she talking about? There was also a pediatric dermatologist in the room. He was just done looking at Gunner and he gave us this little tiny piece of paper. On it he wrote Debra of America - Dystrophic Epidermolysis Bullosa Research Association He told us that this is the national foundation for EB. Your son has a skin disease called Epidermolysis Bullosa. It is where the skin doesn't anchor to itself. He drew us a little diagram and off he went. What in the world is happening right now? I look at my little baby in the incubator with open wounds all over him, dressings that are stuck to those wounds, and him screaming in pain. He heard our voices and immediately stopped crying. He remembers us. We were just slammed with this diagnosis. I immediately thought, we are going to have to do dressing changes so much. I won't have time for anything but to care for this sweet boy. I even thought I wasn't going to take my state boards with so much going on. Our family filled up the entire watiting room waiting to see our baby boy. I couldn't even go out there and tell them the news we just got. Cody was braver than I was and went out to the waiting room and told our family while I stayed in the back with Gunner. They were all in tears as well. They immediately started googling "EB". I couldn't bring myself to it. All I knew was that it is liefelong and required frequent dressing changes.
The next night Cody and I went to our empty apartment. I shut the doors to Gunner's nursery because I couldn't bear to look in there. Cody and I finally went to debra.org. We sat together crying for 3 hours straight. We read about finger nails and toenails falling off, wounds that could last for longer than 6 months, painful baths and dressing changes that lasted 3-4 hours straight, kids so young on strong narcotics for pain relief, hands that are in a mitten deformity because of scar tissue, mu;ltiple surgeries.. The list goes on. They must have this diagnosis mixed up I thought. But the more and more pictures of wounds and blisters I looked at, I knew in the back of my mind those are the same things I saw on my baby. I was devastated. Will he walk? Will he run? Play baseball like daddy did? Will he outlive me and his daddy? I was so scared. I read on to find out that EB or Epidermolysis Bullosa is a genetic skin condition caused by missing collagen VII in your DNA. Collagen VII is what anchors all three layers of your skin together. So, with any type of friction or trauma and pressure to Gunner's skin at all, it will make a blister and his skin will come off because there is nothing in his DNA to hold it in place. There is no cure for EB. It is deadly. Most kids with EB do not live to see over a year old. There are three different types of EB. Gunner has Recessive Dystrophic Epidermolysis Bullosa with the subtype Hallopeau Simons, or RDEB-HS. This specific type, the person usually lives to late teens early twenties. Most people pass away from EB due to infections and increased risk of skin cancer. Gunner's type is also the type with the lowest quality of life. His type wounds heal with scar tissue, so everything tightens up and narrows when wounds heal causing mitten deformities and fusion of fingers and toes. Everything that can happen on the outside also happens on the inside of his body. He can get blisters and narrowing from scar tissue from his mouth all the way to his anus. He also gets blisters in his eyes and corneal abrasions. Our boy was tough already. The next day we went to the NICU armed with some knowledge. We FINALLY got to hold our baby boy on a soft pillow. He got to try breast feeding but it hurt his little mouth with the suction. So i pumped and we lubricated the bottle nipple to reduce friction and he took his first bottle of breastmilk like a champ! It was an exciting day, but we needed to do the first dressing changes so our baby didnt get any infections.
I will never forget it. No one in the hospital had ever seen this or did dressings on someone with EB. Cody and I and all the nurses were watching a youtube video posted by another EB mom on how to do dressings on our laptop. tt took almost 4 hours for 3 people to do dressings. I was the soother at Gunner's head singing to him and syringing him breastmilk and trying to keep him as calm as possible, my amazing mother in law jumped right in there with us and helf each little finger and limb as daddy did the toughest job which was lance blisters and wrap his little body up in expensive wound care products. I will also never forget when we did his second dressing change and I felt brave enough to unwrap him to change his dressings. I remember taking a piece of vaseline gauze and carefully unwrapping it and completely taking off a sheet of skin on his left side. It will forever be etched in my mind. That moment right then was when I realized just how fragile our babies skin was. Kids with EB are dubbed "butterfly children" due to the fact that their skin is as fragile as a butterflies wing. Cody and I both have tattoos that are the EB butterfly. A butterfly made out of an "E" and a "B".
Fast forward to today, 4 years later. October 2015. Everything that I read about that first night on the debra.org site are true. My boy has no finger nails, no toenails, his first two toes on both feet are webbed together, his hands are almost a complete mitten deformity with his fingers fused down to his palms. He has had so many esophageal dilations it is hard to keep up with the number. He can only eat soft foods, he takes 7 meds a day just to start out (not including viamins and all the OTC meds) he is on oxycodone for pain to endure the dressing changes. He walks minimally due to pain and not being able to wear shoes. He has had 4 years of PT, OT, and ST to help him. Hand splints and numerous numerous dressing changes. Limited on the types of clothes he can wear and what won't hurt his g tube. But you know what else? This boy is happy. SO happy. He uses a powerchair to get around in public places, he can now play outside with his chair without the fear of hurting himself or getting germs into his wounds through whatever may be on the ground. He is about to start school soon and an aide will be able to go with him. He has overcome the fear of sitting on the toilet (the toilet seat took the skin off the backs of his thighs the first time we put him on it) and he is fully potty trained. He likes to play with his little sister Zoey. (Zoey is 10 months old. Her birthday is only 6 days apart from Gunner's. She does not have EB, we have a 25% chance every pregnancy that the baby might have EB). He likes to play with trucks and dinosaurs. He likes to rough house (as much as he can) with his daddy just like any other boy does. He is so strong, and he is wherer I get my strengh from. When I am feeling down, depressed or upset about something, I just think to myself, "you arent going through hald of the things that Gunner has to and he still has a smile on his face, cheer up!"
For the first 3 months of his life, Gunner hardly wore clothes, and if he did, that is because we turned them inside out, until we were introduced to this amazing company called Kickee Pants. No seams, the softest clothes, no embroidered edges that could rub a blister on Gunner's torso, no tags, and fit snug enough to keep dressings in place. These things were heaven sent! Gunner received his first pair from an amazing woman named Laurie at the Butterfly Fund. A non-profit organization made to help medically fragile children. Most kids of the Butterfly Fund have EB. Gunner was three months old in his first outift from Kickee Pants. I will never forget the joy that it brought me. I was so excited that I was able to dress Gunner up in an actual cute baby outift that I didn't have to constantly check and make sure it wasn't hurting him. I took a piocture and sent it to his daddy at work. Throughout the years, the Butterfly Fund has sent Gunner Kickee Pants outfits for his birthday, Christmas, and "just becuase" when Kickee Pants outfits are on his wishlist. (Which is always!) We have many pictures of Gunner in them. I soon followed Kickee Pants on Instagram. I quickly learned that not only is Kickee Pants a brand that I'm so thankful for, but they are a brand that is constantly giving back! Every single post makes my eyes water and heart swell with the kindness and genuine caring they have. Such a down to Eath loving company. Then when I found out they made a specific line made with EB kids in mind, I cried even more! They immediately became my absolute favorite kids brand of clothes! A couple of weeks ago, I got an email from Laurie from the Butterfly Fund and Lindsey from Kickee Pants explaiing that they wanted to hear our story so that they could raise awareness for EB Awareness Week which is October 25th-31st every year.EB is so rare and it is so important that we get it out there. Many people do not know about EB or what it entails. Many times when we are out in public we get asked a lot of questions about Gunner. It is so important for us and the EB community to take the time to educate others as often as we can so that maybe one of the times we run into somone, they can say they have heard of EB (which has happened a time or two!) When someone hears of a skin condition, they dont think of a life threatening disease that is so painful with wounds that look and feel like 3rd degree burns. They don't think of the monthly bandage orders that are made that cost 5000-6000 monthly, the OTC meds and creams insurance doesnt pay for, the hours long painful bath and dressing changes that Gunner must go through daily that absolutely wear him out. That is why we need awareness. Awareness=Funding=Research=Cure.
EB is having your child wake up in the morning (which is really the 2nd or 3rd time to wake up since he actually went to sleep) crying automatically because his lips are stuck together with thick scabs. (The coconut oil didn't last as long as it should have). EB is picking up your son carefully, one hand under the neck and the other under his bottom as to not shear any skin while carrying him into the living room. It is laying him down in the floor (still crying) and getting the half empty jar of aquaphor and coating his lips all the while gently pulling them apart. Once they are apart, they are bleeding. You take an unscented sensitive wipey and dab at the excess blood, then hand him his cup. He has to drink it all, because it has his miralax in it. If misses even one daily dose, it is excruciating pain and bleeding trying to go.
EB is guiltily letting your son watch his favorite cartoon while you cut and prepare the bandages. Because you know that his happiness about Elmo will soon be gone once he looks over at you and realizes that it is almost bath and bandage time. You cut and coat all 4-5 (depending on wounds and if they are draining) layers of dressings. You strip your child of his clothes and carefully remove the bandages that aren't stuck to wounds, careful not to pull off any skin in the process, all the while praying that the wounds have healed at least some since the last time they were open and out. Once again, you pick him up one hand under the neck and one under the bottom and carry him into the bathtub, all the while he is pulling at your shirt saying "No no no mama no." You put him in the tub filled with bleach and pool salt water. You listen to him cry for the first minute or so until he gets used to the water and then you smile when he starts playing with his bath toys and splashing you with water.
EB is getting your slippery kiddo out of the tub at the perfect time when there is still a bit of water left in the tub so his bottom doesn't stick to it. You wrap him in a soft baby towel, careful not to let the towel stick into the wounds on his body. You bring him in the living room, let him dry, and put a fresh diaper on. You move him to his "dressing chair" next to the bandages, hand him his "meet meet" (aka blanket) and let him once again guiltily, watch Elmo to distract him. You put on gloves and lube them with aquaphor. If bare gloves touch him, it will rip off skin. You cut away all of the dead and infected hanging skin. You make sure all the wound beds are the red color they need to be, and note the ones that aren't. You lance the blisters with many sterile needles and push out the blood/serous fluid with a 4x4 gauze pad, to be sure it doesn't refill. You start the layering process, one limb at a time.
EB is having to come out of your "momminess" and go into "bandage mode". The determination you get to get through all of this as quick, but as efficient as possible, because your son's life literally DEPENDS on it. It is feeling 20 million different emotions. Happy that one area is healing, but bummed another has broke down that hasn't ever before. Mad that you can't get the transfer to stay in that perfect spot you need it to while you reach across to grab the 3" roll gauze. Giggly when you catch your son dipping his fingers into the aquaphor jar and rubbing it in like lotion. But annoyed when he rubs the greasy goodness into his just cleaned hair. Defeated because you realize your son's fingers have fused just a little more than yesterday, despite wrapping in between them. Mad that there is even EB in this world, thinking of all the things your son could be doing during these two hours besides sitting in a chair in pain. You are also strangely thankful for it at the same time because EB has made your son who he is and you couldn't be more proud of him.
EB is holding back the tears when your son jumps in pain and screams at you to "Stop it, move and no no mama!" It is hearing your son asking you 50 times during the whole 2 hour bandage change, "Momma all done?"
But most of all, EB is having your heart burst with such happiness, love, blessing, and joy when you really are all done, that Gunner looks up at me and says "Ank you!!" (Thank you) and lifts his lips up to you for a kiss. I put all the dressings on his side and back to keep his clothes from causing blisters, button up his onesie and pants, and he crawls away... Completely un-phased by the last 2 hours that were a complete hell on Earth for him in your eyes. He goes over to his trucks and he is down the hall before I can wipe away my happy tear.
Words cant describe how thankful I am for Kickee Pants. I can't thank them enough for choosing to help us in this mission to bring more awareness about EB. Kickee Pants and the Butterfly Fund together gave our family the first sense of "normal" after we thought we would never have that. From the bottom of our hearts, THANK YOU!!
Click the photo above to see our intro post on EB Awareness Week and to learn more about Epidermolysis Bullosa and The Butterfly Fund.