We Fought For Our Joy
It was October of 1991. I had an ultrasound done, it was my seventh month. Things had gone well, other than needing to have my gall bladder out in the fifth month, so we were expecting to see a happy, healthy baby. That was not to be.
I was chatting with the tech, then she suddenly became very quiet. The tell-tale sign of a problem with a baby in-utero. She turned the screen away so that I could not see. I asked what was wrong, she replied, "Everything is ok, the doctor will read this and call you back" . I thought that was strange. But I tried hard to put it all in the back of my mind.
The next day, The doctor called first thing in the morning. He dropped the bomb that changed our lives forever. He told us that our baby had severe hydrocephalus, brain disorder that is often fatal.
We were crushed , of course. He gave us numbers and names of hospitals and a genetics counselor. I called the genetics counselor and made an appointment. I called the office the day before the appointment to ask directions and ask what they would do for our baby. They promptly told me that they would arrange for the abortion right away. I said that I was not going to have one. Then I asked how do you abort a seventh month baby. They said they would crush the skull, drain the contents, and remove "it". I was so angry. My husband and I both gave them "what for" and hung up!
Two hospitals that we called would not see us, due to her condition being fatal, one of which was Hopkins in Md. Union Memorial Hospital told us that the baby's brain had more wrong than just hydrocephalus. Most of her brain was missing, and part was on the outside of her head! More bad news! They also refused to deliver because she was too complicated - these are the experts in high risk OB!
Our last stop and last hope was University in Baltimore. They were very quick to dismiss me as well. They would not deliver because she was going to die anyway. One doctor said, "She'll be nothing but a burden, a heartache, and a sorrow." I said "No, she'll be our JOY!," that's where she got her middle name, Donna Joy.
I told the hospital staff that they WERE going to deliver her. To help them see things my way, I made the following statements: �There is a hotel across the street. I'll move in till I go into labor. I'll show up unannounced to the E.R. Then you'll have a real mess on your hands. One, or both of us die, you get sued and end up on the news. Try me!�
Donna Joy was delivered soon after her lungs were matured with drugs. November 26th. Two days before Thanksgiving! After she was born we had to fight more to get the operations for the shunts, and they tried to starve her by refusing a feeding tube. So in the middle of this modern facility, I was forced to feed her one drop at a time with a syringe. I fed her like that on and off for months until she could suck on her own.
She has hydrocephalus, Arnold-chairi syndrome, holoprosencephaly, cerebral palsy, and peripheral blindness and seizures. With all this, she manages to have a very full, and happy life! She loves to run, play games with her friends, and help others.
I have taken her all over the country to tell people about our experience with refusing to abort and the joys of raising a special child. President Bush waved at Donna Joy just after signing the Partial Birth Abortion Ban that she spent so much time on. All who met her on Capitol Hill have fallen in love with her - except perhaps for a few who opposed the ban.
We are truly blessed to have her!