Name: Molly Barber
Location: Ohio, USA
Family members with EB: Daughter Rachel and Son Matthew.
EB Type: Recessive Dystrophic Epidermolysis Bullosa.
Biography... in her own words:
I was born and raised in Columbus, Ohio. I have two wonderful parents and two younger sisters. I have a bachelor's degree from The Ohio State University. I never thought of being a stay at home mom, I had always pictured myself as a career woman. But as many of you know things don't always go as we have planned.
On September 15, 1995 I married my high school sweetheart Greg and began thinking about having a family. Our first addition to our family was a white and red Cocker Spaniel we named Maggie. Then in January of 1997 I was feeling some changes in my body and began to suspect that I might be pregnant. I ended up taking a home pregnancy test and it was positive. I was so excited, I had never wanted anything so much in my life. I had been helping take care of my 6 month old niece and I loved every minute of it. I called the doctor and scheduled my first prenatal visit which would be another month away. Well I didn't make it to that doctor's appointment. A couple weeks after I found out I was pregnant I ended up miscarrying. I was totally devastated! I had never felt so much pain in my life both physical and emotional. My doctor couldn't give me any reason why this would've happened to me, but I now believe that this child would have probably been affected with Epidermolysis Bullosa (EB) had it lived. Somehow over time I began to slowly heal from this traumatic experience.
It wasn't until January 1998 that I found myself in a similar situation as the previous year. I again found out by a home pregnancy test that I was pregnant. This time I could not feel the joy about this pregnancy that I had felt the previous year. I was so nervous about having another miscarriage. This time I did make it to my first doctor's appointment and saw my baby's heartbeat on the ultrasound monitor. This was the most awesome feeling to know that a baby was growing inside me. This pregnancy went along wonderfully. I didn't have very many problems, besides being pregnant throughout the hottest part of the summer. This baby was due on September 17th.
Almost a week overdue my doctor decided he would induce my labor. I had a very easy labor that only lasted about 10 hours. At 10:53pm on September 22nd my first child was born. We named her Rachel Nicole. She was a very large baby weighing 9 pounds and 21 inches long. Everything was fine with Rachel until the nurse started cleaning her off. At that point the nurse noticed that Rachel's mouth was bleeding along with one of her fingers. She then pulled the vacuum suction off the wall and began suctioning out Rachel's mouth. This did not help at all, it only made things worse. Rachel was taken to the NICU in the hospital until the doctor's and nurses could find out what was wrong with her. It was within 24 hours that Rachel was diagnosed with a devastatingly painful skin disorder called Recessive Dystrophic Epidermolysis Bullosa (RDEB). We had never heard of this before and didn't know what to expect for our daughter's future. I couldn't believe this was happening to us, first a miscarriage and now this terrible skin disorder. I kept thinking, "What had we ever done to deserve this?"
Rachel ended up staying in the NICU for 7 days. Those 7 days and the next 6 months were the hardest days of my life. Rachel's skin was very fragile and would blister or slough off from the slightest touch. We needed to wrap her like a mummy to protect her skin from damage and pop the blisters that she would get. All we wanted was to be parents to a healthy newborn baby, but instead we had to pretty much learn to be a nurse to our child.
After we got Rachel home her skin started to improve dramatically. The care and love we gave her helped her immensely. This is not to say that she didn't suffer terribly from the pain that EB caused her, because she did. But as each day went by we began to develop a routine for bathing and bandage changes that seemed to reduce the amount of pain that Rachel endured. Despite the fact that Rachel has EB, she manages to be a happy and healthy little girl.
Even though my daughter was born with this terrible disorder I absolutely LOVED being a mother. I never could have imagined what it was going to be like to be the mother and protector of this beautiful child. It was the most awesome feeling ever. I loved being a mother so much that I desperately wanted to have another child immediately. Everyone that I spoke to thought that I was crazy, but I couldn't help how I felt. It wasn't until Rachel was 15 months old that I finally convinced my husband, Greg, that we would be able to handle having another baby.
I found out I was pregnant on January 7th, 2000 by doing a home pregnancy test. I was so excited to be having another child. This time I had feelings of anxiousness due to the fact that this baby had a 25% chance of having EB like Rachel. I knew that there was this risk with having another baby, but I never really let myself believe that this baby might have EB also. Everyone had always told me that God would never give anyone more than they could handle, and I really believed we had all we could handle caring for Rachel. But on April 10th through an amniocentesis we found out that the baby boy I was carrying would also be affected with EB.
I was devastated and felt like my world was crashing down around me. This was a really hard time for me because I thought there was no way I could care for two children with this awful disease. Another problem that I was having is that I was getting pressure from my husband to terminate the pregnancy. Even though I didn't want to bring another child into this world to endure a life of pain and suffering, I couldn't bring myself to terminate this pregnancy. After several weeks of arguing and disagreeing, Greg and I finally decided that we would have this baby boy and give him the best quality of life we possibly could.
On August 28th, 2000 we went to the hospital to have my labor induced. At 5:23pm Matthew Alan entered this world. He weighed 7 pounds 15 ounces and was 19 inches long. This labor was just as easy as the first and only lasted 8 hours. Matthew was born without skin on both of his feet from the ankle down. Even though Matthew's feet were a mess, everything else about this delivery was exactly how I dreamt bringing a baby into this world would be. He never left our sight for one minute at the hospital and unlike Rachel he came home with us the same day I left the hospital. We were the ones to take care of him because we were the experts having cared for Rachel for 2 years.
The next few months just sort of flew by and Matthew's feet improved tremendously. Getting accustomed to handling two kids with the disorder was very difficult and time consuming. But with Greg's help we managed to develop a routine and get things done in a very timely manner. As each day went by things got a little smoother and easier. I am very fortunate to have such a wonderful husband and immediate family to help out with the Rachel and Matthew whenever things get a little hectic. Our family has been our biggest support system and we can't thank them enough for everything they do to help out. I can't think of anything that compares to the joy and fulfillment that I have received being Rachel and Matthew's mother. They mean the world to me and I hope that one day they will be able to enjoy life without the hindrance of EB.
Don't let the sun go down on me by George Michael