My husband Joe and I welcomed our second son, Cooper Joseph, into this world on September 4, 2005. I had a very healthy pregnancy until a routine ultrasound revealed that our baby may have club foot and that the ventricles in the brain were larger than they should be at 20 weeks gestation. They sent us to St. Louis to have a 3-D ultrasound. They came to the conclusion that yes, the baby had clubfoot on the right but that the brain was fine. We were so relieved that it was nothing too major and happily went on with the pregnancy.
Almost 2 weeks after his due date, I finally started having contractions. We were nervous because I was trying for a VBAC (vaginal birth after a c-section). I must say that the delivery was perfect! Joe and I talked and laughed, really enjoying the experience of bringing a child into this world. Our sweet baby boy arrived at 3:11 pm. We knew the moment he was born that something was wrong. They called him floppy and we could tell by what they were saying that something was really wrong. I got to hold him and saw that his mouth hung open and he looked so sad and lost. But let me tell you...he was BEAUTIFUL! They took him to the nursery several minutes after he was born. The pediatrician was there looking him over and was in and out of our room many times that afternoon. At 9:30 pm, the Dr. came in to let us know that Cooper needed to be flown to St. Louis Childrens Hospital because he had some seizure activity that indicated something major was wrong. Within a few days of being at St.Louis, they called us into a room and told us that they believed that Cooper had Zellweger Syndrome, that it was lethal, and he would probably die within 6 months. We knew that he had the common features of a Zellweger baby and that he couldn't see or hear, but this news was nothing less than heartbreaking. All we wanted to do was to take him home, love him, and enjoy him. Nine days after his birth we were able to go back to the hospital he was born in. During the 5 days we were there, we learned to take care of him. Mainly we had to learn to feed him through his NG tube. Finally we were able to take him home. We had hospice who provided us with alot of support. We had many difficult times with Cooper including seizures, colds, bladder function, and we could not keep his temperature regulated. All that didn't matter to us. We just kept on loving him for who he was...our beautiful gift from God.
Jesus called Cooper home on November 13, 2005. He was exactly 2 1/2 months old. We were right there, holding him in our arms when he took his last breath. It was a very humbling experience to know that at that moment, he saw Jesus who welcomed him with loving arms.
Cooper J. was the best thing that ever happened to us. We will forever have an empty space in our hearts for our little boy. He filled our lives with joy and love that could only come with his life and passing. For that, we thank our God for knowing exactly what He is doing.
We will always love our Sugarbear!
Joe and Stacey Heberlein
Jude (age 2) and angel Cooper
To contact us for any reason:
Joe and Stacey Heberlein
PO Box 222
Liberty, Il 62347
