-->

Make your own free website on Tripod.com
< After the birth of Jessica Updated January 28, 2002.

Shortly after the birth of my child Jessica, who is now 6, we learned that she had inherited a severe form of eb called the recessive dystrophic type. This type , we were told could never get better but only worse, a lot worse. They said she would be probably be better off dead. She was born without skin from the upper right thigh down to no skin covering the toes.

As the days and weeks went by, my husband and I struggled to keep Jessica alive. We never got any sleep (and sleep deprivation is a form of torture just in case you didn't know) so not only were we extremely exhausted but depressed. The depression for me was the worse, I felt like someone drew this black curtain in front of me, and the world went on La-di-da without me. I fought thru a lot of anger and then I fought with my husband. At least he got to leave the house 10 hours a day, and that was 10 hours a day I had to deal with this horrible condition myself.

I really had no idea what RDEB was really all about. We waited 9 months for the genetic results. They found the mutation in our family (mommy side) right away. We have a family history of eb and its DDEB and it is such a mild case I almost never talk about it. What they found in our family was a 16 base pair deletion, very similar to Recessive carriers (because of the missing pairs), but somehow we are still affected/slightly. (The best way to identify the dominat type is usually in the triple helix of the DNA strand, the pairs don't quite line up like they should. Thus, affecting the individual with just that one genetic mistake.) The recessive type takes two mistakes, one from mom and one from dad. Thats usually the case, however there are spontaneous mutations also which result in RDEB but let's not get too technical, in case you might get confused.

OK, then the Geneticist, Dr. Christiano found the mutation in Daddy. I'll never forget what my sister said to me the week before we heard the news, she said, "the odds were too incredible for Jess to have RDEB, and that i could win the Illinois Lottery first." And I wished I had, because I found out how incredibly expensive Jessica's care was, $ 5,200 a month to be exact and insurance paid only part of it leaving 900.00 to 500.00 dollars a month for us to pay. What a nightmare, at that point I almost wish I had never met Pete. Needless to say, Pete still thinks that he is not a carrier for RDEB, and so does his family.

Stage 2 of the depression began when i found myself constantly being questioned by the baby police. They were everywhere and wanted to know everything, "what happened to her?", they would always ask. And then almost never believed me when I said that she was born with weak skin. I didn't like the looks i got and frankly I somtimes still have a hard time with the staring.
Advice from friends and family came often and NOT VERY WELCOMED. I remember when a relative of mine told me I should put more cream on Jessica's hands cause she said they looked dry. I counter-attacked and told her that she was welcomed to put as much cream on my daughter as she liked. In fact, I suggested that she come over often enough to do it. That kept her quiet for a long time.

Pete and I were not getting along, and it was mostly because he didn't understand about EB and that I couldn't stop her from blistering and losing her nails and skin. He was always screaming at me to be more careful, blaming me for every blister and open wound. I would return the favor if I left Jessie in his care and found a new blister or open wound anywhere. Most of the time she was better off with Pete, I was so tired and stressed out. He did a good job keeping her safe and a better job at bandaging, back then.
Sometimes i would just take off, leave, get a Starbucks coffee and go to the library. I didn't have a computer or even a webtv, so I decided to start researchig EB. Thats when I really began to understand that Jessica would have much bigger problems as the years went by. I couldn't imagine anything being worse than RDEB, and then I found out about the Junctional-Herlitz type. There was a long pause as I read thru the medical pages and then i saw the picture of this tiny baby in incredible agony and I was mortified. His tiny body layed helplessly there while someone took his picture so they could record this in the medical journal. I started to lose respect for some of the people involved in the making of a medical journal, with their need pictures. I remember when they took pictures of Jessica. She was just born and we waited for 3 hours while she lay in the baby warmer screaming. No one could touch her and I was yelling at everyone...JUST BANDAGE HER!!. When the medical team arrived i thought finally they will bandage her and give her to me. Instead they took pictures. I often wonder what kind of blood can run through people like this, who can take a picture of such agony? To this day, that incident hurts me deeply and i question if that is what made Jessica's throat so unusually fragile that her esophageal cast came out several times and that she was hospitalized at 2 months old for esophageal hemmoraging. The Light at the end of the Tunnel....

When Jessica was about 17 months old she started to walk. What we thought would be such a happy milestone turned out to be a disaster for her. As she slowly stepped around she would fall or trip on the slightest of bumps. We had to learn how to help her break her fall without injuring her even more by trying to catch her. Another problem for us was trying graciously to stop friends from picking her up.