Robbie F.'s Story

 At 12:12 am January 25, 1992 I had a beautiful baby boy. When I held him about twenty min later his eyes took a dive. They went right down into his face and then they were bouncing all over. He weighed in at 5 pounds 11 ounces. He would not eat, he had no sucking action whatsoever. They had him in constant care for 4 days not telling me anything thinking I was going to give him up for adoption. I didn't know if I was going to. Every time I thought about it I would cry and I was always with him. I never left his side. I loved him too much so I decided I could never give up my own flesh and blood. As we were (my mom and I) getting ready to leave the hospital with Robbie, the social worker came in and told us that the doctors were doing all these tests on Robbie because there is something wrong with him but didn't know what. Oh by the way his eye closed shortly after birth. That was one of the tests they were doing on him they figured his fist was in his eye in the birth canal but it never reopened. As the week went on it took hours upon hours trying to feed him (no suck reflex). His head was getting bigger so we took him for the regular after baby check up.

His head grew three centimeters in one week so they readmitted him and took him for a CAT scan. It took another week to find out the results. When they came back they took us into a separate room and told us the bad news. The only thing I understood was he would be irritable and a complete vegetable and he would only live 6 to 12 months. Then they told us that he had absolutely no brain. The next day the neurosurgeon came in and also told there was no hope and that he wouldn't put a shunt in because it was hopeless. His doctor at the time came in hours later told us that he was discharged but it would be in our best interest to leave him there and they would feed him glucose and water until he past away. We said there was no way we would let him starve to death by his cruel hands and we took him home to give him a comfortable and loving setting to go to heaven with. We went on with life as usual. We were devastated but loved him just the same if not more.

As the months went by Robbie's head was getting very big and he cried constantly because the pressure was so bad. By the time he was three months old we could not stand to see him in so much pain so we took him to the neurosurgeon and they finally decided to put a shunt in. His head was 51 cm in circumference. Considering mine was 55 cm and for being three months old he had a huge head. No wonder he was in a lot of pain. As soon as the shunt was put in the change in Robbie was unbelievable. The crying stopped and he was extremely content. He only cries when something is wrong. But when in the hospital, (it was a different one from where he was born) little did we know the pediatrician that was there at the time, would be our guardian angel on earth. You see we didn't like him at first when he took care of Robbie.

When we were in a different hospital I was sitting on the floor and he came in sat on the floor with me and told me that if Robbie's heart stops while in hospital they would not restart it. Needless to say I did not like him. Well nine months had gone by and we still continued to see doctor Kavorkian ha ha (the one at the beginning of the story who wanted to starve him). Then Robbie had his first seizure. It was a grand mal and lasted 45 min. We called paramedics who took him to the bad hospital where his doctor said just give palliative care and to take him home. Two days later he had a second grand mal. We took him to the good hospital where the doctor that looked after him when having his shunt done admitted him and started IV seizure meds.. We had told him what the other doctor said, and he asked if he could take care of Robbie. From here on in we welcomed that idea and ever since Robbie has gotten the best of care. His doctor loves him and many other kids like him. He does not play God. He knows that he cannot fix them so he makes their lives as comfortable as he can. If it was not for him Robbie would not be alive today and I would not have been able to enjoy the greatest gift God could ever give me.

Robbie is now the happiest 9 yr. old I have ever seen. He is a beautiful little boy. Robbie has SQCP (Spastic Quad Cerebral Palsy), seizure disorder. He is G-tube fed and has orthopedic problems, has frequent respiratory problems, 2 vp (ventricular peritoneal) shunts and is a very happy little boy. He never cries unless something is terribly wrong. He loves Disney movies and loves to watch cartoons. Loves his cuddles and especially his kisses. We have kissing wars-you kiss him on the cheek and he turns his face really fast then you kiss him on the mouth. He was also diagnosed with cortical vision impairment when he was born.