Kathy Yorgason had an emergency hysterectomy right after the birth of her sixth child, so she was more than surprised at the dream she had one night.
"In the dream I was carrying this baby in an infant seat. She was brand-new and dressed only in a diaper with a receiving blanket. I was carrying her to the hospital and people kept stopping me. They'd comment on her beauty and her sweetness and say, `I can't see anything wrong with her.' But there was some reason why I had to get her to the hospital."I remember falling and she'd get all wet and I was worried that she would be cold. But she was so patient, she gave me this big smile as if to say, `It's OK, Mom.' I was trying to hurry but people kept stopping me and commenting on her big eyes.
"When I arrived at the hospital Blaine [Kathy's husband] was waiting there for me. And when he saw me with the baby, he had this look of sheer joy and excitement on his face. And from this expression I knew that he would love this baby completely."
Some people wait for dreams to come true. Kathy set about to make hers happen. Since adoption seemed to be the only way a new baby could come to their family, she "opened a door" for this possibility.
She quietly informed her husband that a little girl was going to come into their lives. Then she signed the family up to be foster parents to infants who were in the process of being adopted. Eight years went by while she wondered with each newborn girl she cared for, "Is this my baby?"
Then the Yorgasons received a call to take in another foster child, but for perhaps longer than the usual week or so. This baby had health problems: She was hydrocephalic and was born without a cortex.
Kathy understood that hydrocephalic means water on the brain, "but I thought the cortex was a membrane that surrounds the brain," she said.
If an adoptive family couldn't be found, Kathy was told, the baby would probably be placed in an institution.
It didn't take Kathy 10 seconds to volunteer to adopt the infant in addition to being her foster parent.
And Blaine Yorgason? He says in the book he has written about this child, "One Tattered Angel" (Gentle Breeze Publications), that he fell head over heels in love with her.
"Kathy drove to the Social Services office and returned with the baby. I will never forget my first sight of her. At two days of age she was tiny, less than five pounds, and as I took her I remember thinking that I could easily have held her in one hand. She had lots of dark hair, her dark eyes were wide open, and so far as I could tell, everything about her was perfect. I even examined her tiny head for signs of swelling from too much fluid, though I could find none at all. Except for a slightly recessed forehead, she seemed perfect to me, absolutely beautiful. . . . ddenly, after having held her at most for five minutes, I wanted this little girl to be my daughter."
It wasn't until a visiting friend, a nurse who happened to have been in the hospital when the baby was born, blurted out, "That's her! That's the baby who was born with no brain," that the Yorgasons really knew the extent of the infant's health problems.
This child was "hydranencephalic," the Yorgasons were told. She would never know if they were holding her or not. She wouldn't feel pain, see, hear or taste. With a severely impaired immune system, she would be prone to respiratory problems and would probably die soon of pneumonia. Nor would she grow normally; she'd never become heavy to lift.
Dr. Marion L. Walker is chairman of pediatric neurosurgery at Primary Children's Medical Center. He explained the terrible birth defect where children are born without a brain, with only a brain stem.
"In anencephalic babies the skull is open like a dish. The only thing present is the stem of the brain. In hydranencephalic babies there is a skull and inside is mostly just water with a few pieces of brain tissue." He said the brain stem allows these babies to breathe, suck and cry. They live for an indefinite period of time. "The basic brain function in the two is about the same: They don't have any intellectual capacity."
Less than half of the 1,000 anencephalic babies born each year will live more than a day. Some 90 percent are dead within a week. Hydranencephalic babies can live longer, some as long as two or three years or more.
Walker said hydranencephalic babies are deceptively normal in appearance at birth. "They open their eyes, they look like they're OK. Nobody knows anything's wrong. All newborn babies only use their brain stem." But the parents later notice there is no motor skill development and bring their baby back for tests. It is only with a CT scan that parents realize there is no brain in there, and that their child will be a baby forever.
If there is no brain to process information, is the baby really "alive"? Can it feel, see, hear or taste? What quality of life exists within this child missing one of its most important components?
In May, the American Medical Association announced a new policy: State laws should be changed so that babies born with most of their brains missing could be used as organ donors before they're dead. Many people interpreted that statement as really saying it should be permitted to kill certain babies in order to use their organs for other needy infants.
Dr. John Glasson, then-chairman of the AMA Council on Ethical and Judicial Affairs, said at the time that anencephalic babies "don't have any consciousness." The report, published in the May 24, 1995, Journal of the American Medical Society, observed that these babies "never have thoughts, feelings, sensations, desires or emotions." That analysis is now being reconsidered by the council. (See related story below.)
And as the adoptive mother of one such baby, Kathy Yorgason believes otherwise. She knows there is much that is not understood about these children. "These kids are really bewildering," she said. It has taken her 24 hours a day, seven days a week, for seven years to understand her little girl, Charity. But Kathy's patience is legendary - after all, she watched and waited eight years for the opportunity to become Charity's mother.
Blaine turned to the Bible for a name for this baby:
"Charity suffereth long and is kind," it says in 1 Corinthians, "charity envieth not; charity vaunteth not itself, is not puffed up, doth not behave itself unseemly, seeketh not her own, is not easily provoked, thinketh no evil; rejoiceth not in iniquity, but rejoiceth in the truth; beareth all things, believeth all things, hopeth all things, endureth all things. Charity never faileth."
Suffering long would prove to be an apt phrase for Charity. When she was two weeks old, Charity seemed to be in terrible pain and could not be comforted.
At first doctors told the Yorgasons that the infant was only exhibiting a neurological reaction - that she was not really feeling any pain. But Kathy felt otherwise. "She cried, she trembled with pain," she remembered.
Tests confirmed that her head was swelling. When Charity was 2 1/2 months old, Walker performed a right ventriculoperitoneal shunt placement at Primary Children's. It was the first of what would be 11 shunts surgically implanted to relieve pressure inside Charity's head. The shunt would drain fluid into her abdominal cavity via a tube threaded beneath her skin.
Since Tylenol eased Charity's pain, it appeared that she was indeed feeling.
"Charity has infinite patience," said Kathy. "When she suffers, she'll endure it for a long time before she gives up and cries."
Kathy observed that Charity had a definite preference in the formula she was given and she would spit out every pacifier except the one she favored.
Something else was becoming apparent to the Yorgason family as well. When she wasn't in pain, Charity was happy. She responded to their outpouring of love with first smiles and then giggles.
A sweet little game developed between Charity and her family. If someone softly cooed "Ohhhhhhh" to her, Charity would smile and say "Ohhh" back to them. Kathy said, "Every time she'd say it, she'd grin like, `I'm so smart!' She tries so hard to communicate."
Blaine said that when the older Yorgason children call home, the phone is put up to Charity's ear while her siblings say "ohhh" to her. "She will lay there and her eyes will get big and she starts to grin and play the game," he said.
Charity lies on a hospital bed in her bedroom in Riverton. Her hair is a soft brown color. Her skin is like the smoothest porcelain, her chubby little cheeks flushed slightly with color. She has big blue eyes framed with long, dark lashes.
The child is tucked under the quilt she was given at Primary Children's on her first birthday. The tied quilt has a print that says, "I have a little pony, his name is dapple gray." Soft music plays in the background. A "kangaroo" pump drips all the time with either water or formula. Shortly after Charity experienced eight surgeries in three months, she lost her ability to suck and a feeding tube had to be inserted.
After Charity's diaper is changed and her medications given, she will be dressed in pink rompers with ruffles on the sleeves. Because of poor circulation, her feet must be wrapped carefully or she will chill.
Once a week Charity is placed on a frame in the bathtub for her bath, though her father jokes that there is nothing on her that gets dirty except for her forehead, where numerous people kiss her repeatedly.
Kathy Yorgason has become a crackerjack nurse. She discovered a device called Toothettes, made of soft, pink foam rubber on a stick. She moistens the Toothette and dampens Charity's mouth when it dries out. Because Charity suffers from constant mini-seizures to her brain stem, Tranzene must be administered via the feeding tube. Since the drug resists dissolving, Kathy has learned to avoid clogging the tube; she must jiggle the Tranzene as she administers it.
Charity once suffered from terrible eczema. Kathy consulted with dermatologists and by experimentation found the combination that works: hydrocortisone cream followed by Curel lotion. "I can always feel her appreciation," said Kathy. "It's like she says, `Oh thanks, Mom. That feels so good.' "
Kathy has spent hours holding and rocking Charity. A devout believer in things spiritual, Kathy said, "The spirit kept whispering to me to cherish these moments. I thought it was because she was going to die - (but) it was because of her size and my back." Seven-year-old Charity now weighs 50 pounds, much too heavy for a mother with a bad back.
Because Charity is unable to put weight on her bones, she has developed severe osteoporosis. Her bones are so brittle that extreme caution must be used in moving her, and she is just too big for a rocking chair. The Make-A-Wish Foundation donated a rocking love seat so that the Yorga-sons can again hold Charity and rock her.
Charity's big sister, Tami Bestenlehner, cared for the child for three months when she was between jobs. "I spent most of the day rocking and singing to her. Her Christmas favorite was `Silent Night.' " Tammy said she would hold Charity and dance to "Bare Necessities" from "The Jungle Book." "She would laugh and giggle. When you hold Charity, it's like holding love. You can feel it permeate you. I tell her, `Someday I'll get to sit across from you and tell you how grateful we all are that you have been in our home,' " she said in a call from her home in Fort Dodge, Iowa.
Jeff Schmidt is the pediatrician who has been caring for Charity for the past year and a half. "There is something special about her," he said. "There is more going on than what's in her head in terms of brain tissue. She's been given as much tender, loving care as could be given. And I've learned to trust Kathy. If this mom says something's wrong, it usually is," he said.
When Charity developed meningitis at 18 months, her ventriculoperitoneal shunt was removed so she could go home to die. But when the shunt was taken out, Charity started to smile and giggle. "One doctor said they kind of had a party all night," Kathy said.
That was 51/2 years ago. Charity has already lived two years longer than any hydranencephalic children that doctors at Primary Children's are aware of.
There will be no heroic measures - no more trauma, no more hospitals for Charity. "We're not going to keep her here if she wants to go," said Blaine.
"We want her to have a quality life," said Kathy. "She seems to be taking care of the quantity herself."