T-Kay Ivie is preparing for the birth of her third child by making funeral arrangements. Instead of setting up a crib, 24-year old T-Kay and her husband Kent, 25, of Roosevelt, have already chosen a tiny, wooden coffin to be lined with blue satin.
Rather than getting out newborn T-shirts and pajamas, the Ivies must decide what outfit their small son will wear when he's buried. In place of birth announcements, hundreds of helium-filled balloons will be sent skyward on the day the fragile body of Sean Merrell Ivie is laid to rest.The balloons, his mother believes, will rise with Sean to heaven, symbolizing his spirit. A living, loving, real and vital presence that just happened to come to earth inside a crippled mortal body doctors don't expect to live more than a few hours at the very most.
What the Ivies want more than anything is just to hold their son as soon as he is born and be able to look into his eyes while he's still alive. "The most important thing is to see him alive for one minute, or one hour or one day. That's our whole goal, to be with him for just a little while," said T-Kay Ivie.
She also hopes that what she is going through now will someday benefit someone else in the same situation. "I thought if I have to go through this I want to help other people and here's this little baby who's going through more than I am."
Although Ivie is now eight months pregnant, the child inside her stopped growing when he was five months old. On Jan. 18, the Ivies learned that an ultrasound taken earlier during a routine visit to the doctor had shown their third child, a son, was not growing normally.
By Feb. 15, further tests confirmed that the baby had a rare birth defect called thanatophoric dysplasia, a type of lethal dwarfism characterized by extremely short and bowed femurs, short ribs, but with a trunk and head of normal size.
The defect is so rare it occurs less than once in every 10,000 births, and affects only male babies. Because the heart ends up taking up three-quarters of the tiny body, and the bones in the chest and back are so brittle, the child is unable to survive long after birth.
At first doctors and even a genetic counselor provided the Ivies with very little sympathy or support.
"They took us into a room and said, here's reality, your baby's going to die," Ivie said. "It was just so cold. You might as well have shot me in the head and I would have felt better."
Doctors even offered to perform an immediate abortion. The thought was abhorrent to Ivie. And she still held out hope that perhaps the doctors were wrong. Maybe the baby would be born with dwarfism but have a full life.
"Even if he lived, he's not that different," Ivie noted, "he just has little arms and legs. I wasn't worried about Kent or me accepting him, I was worried about everyone else accepting him. But now I think, who cares what everyone else thinks?"
And then, she said, she got angry. She wanted more information and began poring over medical books herself. She also asked for names of women she could talk to who had faced similar situations.
She met one woman who had three sons who were born with dwarfism. They were obviously dearly loved by their mother and very well-adjusted, she said. Her search located just one woman in Salt Lake City who had delivered a baby with thanatophoric dysplasia, who was able to provide Ivie with helpful information on how to plan for the birth.
Although the baby could come at any time, because such pregnancies are often accompanied by premature labor, Ivie said plans for the birth include having a Caesarean section at the University of Utah Medical Center. She wants to have her family, including Sean's older brothers - 4-year-old Shelby and 2-year-old Eric - present for the birth.
No medical measures will be taken to prolong the infant's life. "Me and my husband, all we ask is we have him (delivered) where we want him. That he not be on life support. That they just hand him to us so we can spend time with him and our family."
While awaiting her son's birth, Ivie admits it's sometimes hard to maintain a positive attitude and appearance, but when life's cruelties start to overwhelm her she quickly pushes negative thoughts aside. "I have to look at this in a spiritual manner in order to be able to handle it in the physical sense.
"Every time I think I can't do it anymore or have a bad thought, this kid kicks me and let's me know, hey, I'm still in here, don't give up on me!"