Heartbeats: Baby Rachel Celebrates Her First Christmas : ‘It’s a Hard Job. You’re Going to Save Her Life Every Day for the Rest of Your Life--Maybe. It’s 24 Hours a Day, Too. No Weekends Off. But We’ve Never Regretted It. She’s Worth It.’
These days Baby Rachel is a plump little girl with thick, curly brown hair who looks at the world with wide-eyed curiosity.
Eleven months after she nearly died at birth and eight months after her heart transplant at Loma Linda University Medical Center, she lies in her crib in soft pink pajamas and kicks her feet in the air, studying them with interest.
Or she sits on a couch and watches carefully as her mother takes a piece of paper away and hides it.
A few seconds later her mother, Maria Pritchard, 31, hugs the 19-pound baby, now grown to 31 inches, and says she is developing well after returning to the hospital for two months last summer when she showed signs of rejecting her new heart.
“She just learned to sit up. And her hand-eye coordination has come a long way,” says Pritchard, an articulate woman with curly, shoulder-length brown hair. “She just started making sounds since she came home in August.
‘She Loves to Be Outside’
“She loves to be outside. She loves to be included when we’re at the dinner table.”
Yet Rachel lags behind children her age in some areas because she has spent so much time in the hospital, her mother said. “She can’t support herself on her feet and she can’t imitate play, like patty-cake,” Pritchard said.
Even so, Rachel’s agility, curiosity and healthy pink color make it seem long ago that searchers spent nine weeks to find a heart donor for her--days during which Rachel looked so sickly that Pritchard resigned herself to the fact that her daughter was going to die.
“She stopped eating. Her back bone stuck out like a comb. She looked like a starving little Ethiopian child,” Pritchard said. “On Sunday, April 27, it was obvious she was only going to live a couple of more days.”
The next day the Medical Center received a call that an anonymous donor had been found, and the following day, April 29, a team headed by Dr. Leonard Bailey implanted the new heart in Rachel.
Born with hypoplastic right heart syndrome with transposition of the great vessels, a condition in which the main vessels that usually come out of the left side of the heart came out of the right side and vice versa, Rachel became one of four infants a year or less old to survive heart transplants by the Loma Linda team. Three other babies died.
Aware from the start that their daughter’s chances of survival were minimal, Rachel’s parents said that from the time of her birth Jan. 10 they dreamed about celebrating Christmas with her.
“When she was born we’d think about Christmas and how it would be so nice if she could be with us,” Maria Pritchard said. Today the family will exchange small or hand-made gifts around a heavily ornamented tree and will take Rachel to Mass at Our Lady of the Rosary Cathedral.
“We feel gratitude, thanks and joy,” said Pritchard, who until today had not revealed the family’s name. “We’ve had more emotions this year than you otherwise could have had in a lifetime. There’s devastation, then worry, then joy. We share the joy with other parents when the transplants are successful. When they lose their baby, we have the grief and fear all over again.”
All the emotional ups and downs have not stopped Pritchard from wanting another child. She is pregnant, and her baby is due April 29--the first anniversary of Rachel’s transplant.
Despite that coincidence, Pritchard says she is not overly concerned about giving birth to another child with a heart defect.
“She has hypoplastic right heart syndrome, and that’s not supposed to be hereditary,” Pritchard said, and added that according to medical research, the chance of her baby being born with a similar heart problem is remote.
“I’m not worried,” she said. “My husband and I talked and we would like to have four mutual children. This isn’t the end of the world. Life goes on.”
Maria and her husband, Michael, 41, have a son, Gilbert, 2, from their marriage and a 15-year-old son, Erik, and 13-year-old daughter, Amy, from Michael’s previous marriage.
The children and their parents are crowded into a small, two-bedroom home, but lack of privacy only begins the list of difficulties in caring for a baby who enters uncharted medical territory every day she survives.
Surgeons around the nation say that many questions remain about the length and quality of life for infant heart-transplant recipients, including the long-term effects of the anti-rejection drugs these babies must receive.
They also wonder whether the drugs’ effect on the immune system will seriously impair the babies’ ability to fight the infectious diseases that every child encounters and usually fights off.
These concerns permeate the lives of Maria, Michael and their children almost 24 hours a day, even though the medical center is paying the cost of the transplant, which can reach $100,000, as well as all follow-up care.
Two plastic bags, signs of the family’s constant concern with Rachel, hang from the side of her crib in the Pritchards’ living room. One bag contains a stethoscope and the other holds a series of medical charts.
Quit Job to Care for Her Baby
Maria Pritchard, who quit her teaching job to care for the baby, uses the stethoscope to check Rachel’s heart several times a day. She also takes Rachel’s temperature regularly and counts the number of times she needs to change Rachel’s diapers. She records all the results on charts because any variation could be a sign of rejection or infection.
Since Rachel takes drugs that can suppress the body’s natural immune response, if Maria or Michael suspect they are getting a cold they are supposed to avoid Rachel completely or wear masks if they come near her.
“We have to wash our hands almost constantly,” Maria said, “even if we put on shoes or handle the mail, before we touch her.
“We have to keep her out of crowds . . . and we can’t go far from home because if anything goes wrong, you’ve got to get to the hospital right away. If she gets a rash and it’s not something we’ve seen before, we take her right away. All the babies’ families have moved to local areas because getting to the hospital (quickly) is so important.”
Maria and Michael are not complaining, however. They remember the day Rachel was born seemingly healthy and how their hopes plummeted the same afternoon.
Maria said all Rachel’s vital signs, including her heartbeat, were strong during pregnancy, and the baby seemed healthy at birth at St. Bernardine Hospital. But within hours the baby began to change color, and doctors discovered an underdeveloped heart. The doctors told Maria the baby was going to die.
Michael was at the hospital for the birth. “Then I went home and started to take a nap,” he said. “I got a funny feeling I should call her and she was crying. . . . She said, ‘Michael, it’s not good. The baby is going to die.’ ”
He rushed to the hospital. “I almost fainted,” he said. “The doctor . . . said the baby would die, perhaps not this minute, but . . . more than likely within seven days.”
The doctor said the only hope was a transplant, but the couple rejected that idea because chances seemed slim that the baby would last long enough to find a donor with her uncommon B-positive blood type.
A social worker advised Michael to make funeral arrangements and to alert the coroner, which he did. But no one told Rachel about the plans.
Maria said the hospital placed the baby, without life-support systems, in a nice, isolated room with a rocking chair and an incubator-like chamber. Maria and Michael’s extended families began showing up to rock or sit with Rachel almost 24 hours a day.
“She started getting better with human contact,” Maria Pritchard said. “At the end of 13 days she gained six ounces. Her coloring was better. She didn’t seem to be going downhill.”
Doctors at St. Bernardine sent her home, still assuming that her chances for survival were minimal.
“After a month and a half, she was still gaining weight, still eating,” Pritchard said. “She was having trouble breathing, but not terrible. She wasn’t blue at all.
‘We Owed Her Every Chance’
“The doctor asked again if we would consider a transplant. We figured she had hung on this long by herself, so we owed her every chance.”
A social worker and a transplant coordinator from Loma Linda University Medical Center interviewed Maria and Michael for four hours to determine whether they could raise a baby who survived a transplant. The next day the hospital decided to accept Rachel as a transplant candidate. On Feb. 21, Rachel’s name was added to the national list of donor seekers.
By April 9, several babies across the nation had died waiting for hearts, and the medical center took the unusual step of appealing publicly for help. Slightly more than two weeks later, a donor materialized.
Michael, a sculptor and woodworker, said the strain of waiting for a donor was awful, but the emotional roller-coaster then and during the coming months was worth the pain.
“She did things that defied nature,” he said of his daughter. “Stress-wise, you wait for her to die. You go through all the lousy business of calling the coroner and making the funeral arrangements.
“Then you’re on the donor program, so you hope and pray they come up with a donor. Then you’ve got to wait and see if the heart works. My biggest fear was that it wouldn’t start.
Advancing Into Unknown
“You’re prepared for this. The doctor tells you we’re advancing into the unknown. They tell you the worst.
“Then the kid lives. That’s when the work begins. Then you worry, is she going to survive this? The first time she gets sick, you panic. She’s doing a normal thing. She’s rejecting the heart. Everybody cries and weeps and moans and is terrified, but they pull her through.
“A lot of people overlook that strain. They want to see the cuddly baby. But it’s a hard job. You’re going to save her life every day for the rest of your life--maybe. But every day that’s your business. It’s 24 hours a day, too. No weekends off.
“But we’ve never regretted it. She’s worth it. She’s a beautiful human being. She fills you up with joy. How can you hate your own children? They’re gorgeous. They are your wealth.”