When I was 5 months pregnant, my water broke and I was ordered to have bed-rest. I stayed in the hospital and finally gave birth to Johnnie. He was three months premature, weighing 2.2 pounds and he was affected by amniotic band syndrome (ABS). His right leg was missing the tibia and had an S shaped fibula. His left leg had many bands around the leg and foot. The right leg was broken and it was a clubbed foot. It was l976 and I tried to find any kind of support group to get some help in dealing with Johnnie’s deformities.
We were told that John would have to have his right leg amputated. His hands were in a fist position and the other joined together at the tips. My husband and I were so sad We were given names of “the best” doctors and surgeons in New York City. Every doctor we went to had a different story. One wanted to cut both legs off above the knee. Hand surgeons told us that he should have parts of his hands amputated. The told us in the hospital when John was born that he would probably be retarded, never be able to play with other children or ride a bike, etc. We searched and searched until we found a doctor that helped us. John did lose his right leg above the knee. Altogether he has had 27 operations. His aptitude was tested to see if he should be in a normal class. It turned out that they told me John should be in a gifted children’s program. Now, John is also a drummer living on his own in L.A.
I hope someone will read this and know that these children with ABS just need love and nurturing like any other child. The most wonderful experience in my life was giving birth to my beautiful baby and the constant joy I have with John in my life. I wouldn’t trade him in for anything. Please love your babies. It’s hard at first but the joy it will bring you is worth it.
Maria
