James and Connie Crawford of Gurnee carefully planned their lives and their careers.
The Crawfords, who are successful Lake County optometrists and manage their own practices, even diligently planned when they would have their first child.
But what they could not plan for was having a baby who would be born in need of a heart transplant.
On May 20, a day after Alexandra was born in Lake Forest, the Crawfords learned their daughter had been diagnosed with a hypoplastic heart. Her only hope for life is a new heart, one that may never come.
”It`s very difficult to describe,” said James Crawford, 32, speaking from his office in Waukegan. ”This was our first child. It`s something we had planned out. . . . It`s definitely changed our lives, like everybody told us it would. But it has changed it much worse than we had anticipated. We just want to get Alex a heart so we can bring her back home.”
That may be difficult, however.
The Crawfords` child, referred to at the hospital as ”Baby Alex,” has been listed in critical condition since she was born. So far, donor organizations have not found an infant heart that fits her O-positive blood type, her weight and size.
A baby with a hypoplastic heart, which means she was born without a left ventricle, can live an estimated six to eight weeks outside the womb without a new heart, said Erin Shields, a spokeswoman for Children`s Memorial Hospital. Baby Alex was 7 1/2 weeks old Thursday.
The average waiting time for an infant heart transplant was 41 days in 1991, according to the Regional Organ Bank of Illinois, based in Chicago. Baby Alex is 51 days old.
”It`s almost like a crap shoot,” said Dean Lichtenfeld, supervisor of the regional organ bank. ”You`re trying to match a recipient to the donor as precisely as possible.”
Locating infant organs is more difficult, because they are smaller and more scarce than larger organs, he said.
For the Crawfords, there was no indication during the pregnancy that their baby had medical problems.
”I had a perfect pregnancy,” said Connie Crawford, 31, who has spent every day at the hospital and reduced her work schedule to three days a week. Her husband joins her as much as he can.
”I never had a day of morning sickness,” she said. ”The heartbeat was very strong. Fifteen hours later, we got the low blow.”
In many ways, the Crawfords have had the perfect life. The two met in 1982 at the Illinois College of Optometry in Chicago. They married four years later, after graduation. They eventually moved to Lake County, where each began an optometry practice. He went to Waukegan; she began in Antioch.
Connie Crawford described the effect of the news of her daughter`s heart condition as ”humbling, very humbling.”
”You just can`t plan your life the way you want,” she said. ”It takes so many turns. God has a plan for everything. Hopefully, Alex is helping doctors improve their care of transplants so they can get a heart.”
For 51 days, Baby Alex has breathed through a ventilator in the neonatal intensive care unit at Children`s Memorial Hospital.
Her frail pink body is connected to dozens of intravenous tubes that feed her, medicate her and monitor her condition around the clock. Stuffed bunnies, bears and ducks surround her small bed, adding a touch of warmth and brightness to a serious room.
Connie Crawford said it takes 10 minutes of adjusting the tubes and rearranging the hardware to get her daughter into her arms.
”It`s quite an ordeal, but it`s worth it,” she said. ”She very seldom opens her eyes. She is sedated most of the time.”
In the first weeks of Baby Alex`s life, Connie Crawford was allowed to hold her baby for up to three hours at a time. But the doctors have reduced her time to an hour, because the baby`s condition is beginning to weaken.
Connie Crawford the doctor knows the chances for her baby`s survival each day a donor is not found. Connie the mother hopes and prays that a miracle will happen.
”She has shown she wants to live,” she said. ”She is still very strong.”
If a heart is found, Baby Alex will have an experienced surgical team doing the transplant. Since 1988, the pediatric transplant team at Children`s Memorial Hospital has performed 37 heart transplants, said Shields.
Fourteen were performed on infants younger than a year old. The youngest patient was 2 days old. The oldest was 17.
The survival rate, said Shields, is 70 percent to 80 percent during the first year and 70 percent during the three to five years after the transplant. A child or infant who needs a transplant has a 75 percent chance of receiving a donor organ in time for a transplant, she said. The cost of such an operation and for the first year of recovery is about $432,500.
The Crawfords know that time has become critical for the survival of their child. They contacted a nationwide phone bank Wednesday night to look for a potential donor.
They got help at the phone bank from Dwain and Theresa Kyles, whose child, known as Baby Quinn, was born with a hypoplastic heart Dec. 2, 1991.
Baby Quinn received a heart transplant Dec. 15, 1991, at Children`s Memorial Hospital.
He attracted attention before his birth when his parents launched a national fundraising campaign to pay for the costs of surgery and medical care.
”We called 300 hospitals to make them aware of our need for a donation,” Connie Crawford said. ”We wanted to remind them.”
Baby Alex is No. 1 on the donor list in Chicago and in a 2,000-mile radius, James Crawford said.
”Her criteria is at a critical level,” he said, ”and she needs a heart as soon as possible.”
