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During Amanda Hogan's 17th week of pregnancy, the 31-year-old mother of two girls faced a crisis. She had developed a condition in which her own Rh-negative blood was producing antibodies that were attacking the Rh-positive red blood cells of the child she was carrying.
Amanda's obstetrician in her hometown, Sioux City, Iowa, had been carefully monitoring the baby's condition, and Amanda had also consulted Michael Barsoom, MD, director of maternal-fetal medicine at Creighton University Medical Center in Omaha, Nebraska, 90 minutes away. So far, doctors had found no evidence that the antibody levels were causing harm.
Suddenly, however, an ultrasound test revealed problems in the flow of blood through the baby's brain, indicating that she was anemic. Amanda's doctors were very concerned.
"I've never been so terrified in my life," Amanda says. "Every day, I'd wake up and wonder, Is this the day I lose my baby?"
Each year in the United States, thousands of pregnancies involve mothers and babies with similarly incompatible blood types, but Rh disease has been largely preventable since 1968, thanks to a shot for the mother that greatly reduces her risk of forming antibodies. According to Dr. Barsoom, the injection treatment can lower the chance of a mother's developing the problem to less than 1 percent.
Amanda did have the shot during a previous pregnancy. Why it did not work for her this time is unknown.
Dr. Barsoom told Amanda and her husband, Keith, 35, that there was only one way to save the baby: a fetal blood transfusion. Under ordinary circumstances, the procedure involves inserting a long, thin needle into the baby's umbilical cord and giving her Rh-negative blood, which her mother's antibodies won't destroy.
The treatment is usually done after the 20th week of pregnancy, when the blood vessels in the cord have grown large enough to accommodate the transfusion needle. If a baby needs the transfusion before that stage, a doctor can inject the blood into its abdomen.
In Emma's case Dr. Barsoom advised moving ahead immediately with the treatment. "Given the fetus's anemia, there was no other choice but to do it at that time," he recalls.
"I felt I'd aged 20 years during those weeks," says Amanda, who was devastated to know that her baby, whom she and Keith had already named Emma, was in increasing jeopardy. The couple decided to take a chance on a transfusion.
In severe cases like Emma's, the child typically receives transfusions every two to three weeks. By the 30th week of the pregnancy, Emma had required six, each of which imposed on Amanda a small chance of miscarriage or preterm delivery.
"I felt so helpless," says Amanda. "All I could do was pray she would be okay."
During the last several transfusions, Dr. Barsoom needed to keep Emma still, so he injected her with a drug that causes temporary paralysis. Using ultrasound images as a guide, he maneuvered a long, thin needle through the uterus into the umbilical cord and delivered the Rh-negative blood that was needed to refuel the baby's tiny body and -- he hoped -- protect her from her mother's harmful antibodies.
During week 31, three days before her seventh scheduled transfusion, Amanda called Dr. Barsoom in a panic. Emma wasn't kicking much anymore. The doctor told her to come to the hospital right away for the procedure, during which Emma's heart rate plummeted, forcing the doctors to do a C-section.
Meanwhile, Keith, thinking that his wife was having only a transfusion, had gone to the hospital cafeteria to get her a sandwich. "When I got back to the waiting room, they told me my wife had just undergone emergency surgery."
He and Amanda had a 5-pound, 6-ounce daughter, he learned, but the tiny dose of paralyzing drug the baby had received for the transfusion meant that she was having some trouble breathing on her own. That issue, as well as the fact that she was not full-term, meant she needed to be put on a ventilator. Keith got to see Emma briefly as she was whisked away to the hospital's neonatal intensive care unit.
"My wife was still in the operating room and I was alone," he recalls. "I had a long talk with God and did a lot of pacing."
When Amanda awoke from the general anesthetic she'd been given for the c-section, she asked to be wheeled into the nursery to see her new daughter. "She looked so angelic, my heart just melted," Amanda says.
After Emma's medication wore off, her breathing improved but she had to remain at the hospital for three weeks to gain weight and strength. While Keith took care of the family's two older girls, Amanda stayed in Omaha so she could spend every waking minute with Emma.
"I was so worried something would happen to her, I could sleep only a few hours each night," she recalls. "I believe that my holding Emma so much made her heal quickly."
When the Hogans brought Emma home, Amanda couldn't stop crying. "I was so thankful to have all my girls together at last," Amanda says.
Last Christmas, Emma's stocking bulged with gifts, and five days later, the Hogans held a huge party to celebrate her first birthday. Today, she's a happy toddler who loves to dig in her sandbox and play with sisters Lauren, 9, and Abigail, 6. "It's been one miracle after another," says Amanda. "Every doctor says she's amazing."
First-time mother Talitha McGuinness was ecstatic when a routine eight-week ultrasound showed she was carrying identical twin girls, only to be devastated six weeks later at her next ultrasound. The doctor who reviewed the later scans discovered a terrible problem. "He told me that both my babies would die if I let nature take its course," remembers the 30-year-old graphic designer from Kannapolis, North Carolina. "I was in shock."
The doctor had noticed that the babies were dangerously different in size. In addition, the smaller one had so little fluid in her amniotic sac that she looked as though she'd been shrink-wrapped to the uterine wall. He explained to Talitha that twin-to-twin transfusion syndrome (TTTS) can cause these abnormalities. The disorder, which affects a tiny percentage of identical twins, occurs when faulty blood vessels in the placenta allow one twin to siphon off blood from the other, sparking life-threatening complications. For the twin referred to as the "recipient," the increased blood supply eventually sends the heart and kidneys into overdrive and leads to congestive heart failure. The "donor" twin, on the other hand, can lose so much blood that heart failure becomes a possibility. The disorder also causes the twins to have uneven amounts of amniotic fluid. As a result, the donor twin risks orthopedic deformities.
Talitha says she had three options: She could abort both babies and try to become pregnant again. She could sacrifice the smaller twin in hopes of saving the larger one. Or she could try laser surgery to close off the faulty blood vessels and let the blood redistribute evenly, a procedure that could result in miscarriage and the deaths of both babies.
"I had to make a life-or-death decision," says Talitha. She left the medical office and called her husband, Lee, 33, in tears.
Talitha's despair grew when she went online that night to learn more about the disorder and the laser surgery that might fix it. Reading stories of families who had lost babies to TTTS was so upsetting that Lee had to take over the research. Within a week, the couple had decided to gamble on the surgery, developed and performed by a Florida physician, Ruben Quintero, MD, director of maternal fetal medicine at the University of South Florida, in Tampa. Dr. Quintero agreed to see the McGuinnesses a few weeks later.
During the 10-hour drive to Tampa for the procedure, Talitha's confidence alternately surged and plunged. "I was excited that Dr. Quintero had agreed to help me, but in my heart I didn't believe we'd end up with two surviving babies," she says. "I'd feel hope bubble up, then I'd think about the risks and brace myself for disappointment."
Talitha felt sick to her stomach with fear, but a presurgical ultrasound the next morning revealed the actual source of her nausea. At 19 weeks, her contractions had started, far too soon for the twins to survive. Dr. Quintero stopped the contractions with medication immediately and, the following day, proceeded with the surgery. After giving Talitha a local numbing agent, he determined which blood vessels in the placenta were faulty. He then slipped a laser fiber through 1/4-inch incisions in her abdomen and uterine wall and sealed off the vessels causing the abnormal blood flow. The babies' fate would be clear in just 24 hours.
The following day Talitha lay on an examining table as a technician maneuvered an ultrasound wand over her belly. "I was so nervous I was holding my breath," she says. "Finally the technician said, 'Baby A seems fine.' Another eternity went by before she said, 'Baby B is okay, too.' That was the smaller twin. I wept when I saw the image on the screen. She had so much fluid in her amniotic sac that she could swim around like a little fish."
There's a slightly higher chance of premature birth following prenatal laser surgery, so after her return home Talitha consulted a high-risk-pregnancy specialist, who put her on bed rest. She astonished everyone by making it to 36 weeks (within the normal range for a pregnancy with twins) and gave birth vaginally to Caelie, who weighed in at 4 pounds, 4 ounces, and Ella, 4 pounds, 10 ounces. "I feel so blessed," says Talitha, who now volunteers at the Fetal Hope Foundation, which provides support to families affected by TTTS and other fetal issues.
Today, her daughters are lively 3-year-olds who love to be the centers of attention, whether they're belting out a favorite song or telling princess stories. In quieter moments, they finger-paint or scribble in coloring books. But their favorite sport hasn't changed. During lessons at the YMCA, both kids plunge into the pool and swim side-by-side -- like little fish.
If it weren't for an intuition Christie Geaschel calls "a sign from God," her daughter Karina would not be alive today. The 35-year-old mom planned to give birth to her eighth child at her Rockford, Illinois, home with as little medical intervention as possible. But two months before Christie's due date, she noticed something worrisome. "Every time the midwife examined me, the baby was feet down or sideways in my uterus," she says.
Though this is not unusual for most women at the seven-month mark, Christie didn't see it that way. "At this point in my other pregnancies, my baby was head down," she says. Although the midwife wasn't concerned, Christie insisted on an ultrasound. "I felt God was telling me that something was wrong and that I should get it checked out."
When it came time for the test, Christie's husband, Bill, 35, a sheet-metal worker, and their seven kids crowded into the room. The children -- six girls and one boy, ages 2 to 13 -- were thrilled, thinking they'd learn whether they'd be getting a brother or a sister. But Bill was immediately alarmed by what he saw on the screen. "The baby's face looked swollen," he says. "I asked if there was a problem, but the ultrasound technician wouldn't tell me. That's when I really got scared."
The technician went into another room and returned with a cordless phone. She had Christie's midwife on the line to break the devastating news: The baby girl had a lemon-size growth that had deformed her lower face and jaw. "I was stunned, but I forced myself not to cry since my kids were in the room," says Christie. She gathered her family around to explain what she'd just learned. The children were confused. Bill almost fainted.
Christie went home and e-mailed friends and relatives, asking for their prayers. Then she broke down in tears. Over the next few days, she and Bill talked to a family doctor. He suggested they consult a local maternal-fetal medicine specialist, who in turn referred them to a team of doctors at Northwestern Memorial Hospital, in Chicago, 90 miles away. There physicians told the couple that their child, whom they had named Karina, had a solid mass of unknown type that appeared to be blocking her mouth and throat. The growth was potentially life-threatening, because after Karina was born she might not be able to breathe on her own.
Karina's best chance at survival was an operation called an ex-utero intrapartum treatment (or EXIT), a rarely performed procedure. Surgeons would deliver Karina's head and upper body by C-section but keep the rest of her in the uterus, attached to the umbilical cord and placenta. Because she would continue to get oxygen-rich blood through the cord, she would be able to survive for an hour or longer without breathing on her own. This would give doctors time to establish an airway and figure out the next steps, according to Susan Gerber, MD, one of the hospital's maternal-fetal medicine specialists and the lead surgeon of the team that worked on Karina.
Since the doctors didn't know what they'd find, they couldn't estimate the odds of success. The procedure also involved hazards for Christie, including infection and severe bleeding. "We were frightened," says Bill. "I told the doctors that our kids needed their mom."
As gently as possible, the Geaschels explained to their older children that the doctors would do their best but that there was a chance their new baby sister wouldn't make it. "I felt so sad," says Britta, 13. "I kept praying and hoping she'd be okay."
On the day of the operation, the surgical team gathered in the hospital's operating room. The group included Dr. Gerber, who would perform the c-section, two doctors to assist her, two anesthesiologists, a team of neonatologists to examine the baby after delivery, two ear-nose-and-throat specialists to create the airway, and several nurses. Given the size of the team, they had to spend an hour rehearsing with a doll so they could choreograph their movements for the complex procedure. After the operation was over, the plan was to take Karina to another Chicago medical facility, Children's Memorial Hospital (CMH), where more doctors would decide what treatment she should receive next.
Bill kissed Christie as she was wheeled off for surgery. After their 5-pound, 5-ounce daughter was partially delivered, specialists slipped a breathing tube past the growth and then completed the delivery. Christie woke up in time to say good-bye to Karina before she was rushed away. "I got to touch Karina's fingers and was so thankful she was alive," Christie says.
Karina was still in grave peril, however. "Though the tumor wasn't cancerous, it had invaded the baby's lower mouth and jaw," reports John Maddalozzo, MD, a head and neck surgeon at CMH who examined Karina. "Surgery to remove it would have been dangerous and disfiguring." Instead, he and Karina's other doctors decided to shrink the fibrous growth with chemotherapy.
Bill and Christie worried about the typical side effects of chemo, but to their relief, Karina experienced no vomiting or fevers and didn't lose her fuzzy brown hair. After six weeks of chemo, she could drink from a bottle, and when she was 8 weeks old, there was even better news: Her doctors decided she was well enough to go home, where she'd receive chemotherapy only once a week.
The Geaschel kids wanted to help their sister get well, so Christie taught Armin, 11, and Britta how to change the IV line used to deliver the chemo. Anna, 10, helped with bottle feedings.
Little by little, Karina did improve. When she was 3 months old the tumor was almost gone, and at 8 months her doctors stopped the chemotherapy. There is damage to her lower jawbone, though, so she'll need reconstructive surgery when she's older. Doctors thought she might have trouble talking, but recently Karina surprised her parents by saying her first word, a perfectly enunciated "Hi!"
"Every little change is so exciting," reports Christie. "We're thrilled by things other parents take for granted. Now a year old, she's even blowing kisses!"
Originally published in Ladies' Home Journal, December 2008.