One thing most parents do not look for during pregnancy is surprise. For Kim and Bob Ageloff of Greenwich, CT, pregnancy was "one surprise after another, from start to finish," Mrs. Ageloff said. The collaborative resources of the Maternal - Fetal - Medicine Program of Sloane Hospital for Women and the Pediatric Surgery Service at Morgan Stanley Children's Hospital of CUMC turned life-threatening surprises into happy outcomes for the Ageloffs and their twin sons, Will and Josh.
The Ageloffs were in their mid-30s when they married in 1998. At the time, Mrs. Ageloff owned an interior architecture design firm in Chicago; Mr. Ageloff is a commercial real estate consultant. Having children was a high priority for them, so when they hadn't conceived a child within a few months of their marriage they consulted several physicians about IVF, and they also began pursuing adoption.
"I was told I had less than a 5 percent chance of conceiving," Mrs. Ageloff said. "A physician in Stamford recommended Dr. Mark Sauer, an internationally renowned expert in in vitro fertilization at NYPH." Then, in 1999, everything happened at once: the Ageloffs adopted a newborn, Kyle, and four months later Kim Ageloff got pregnantwith twin boys! She was referred for monitoring to Mary D'Alton, MD, Director of Maternal-Fetal Medicine at Sloane Hospital for Women, CUMC, NYPH.
"Many women over 35 are at risk," Dr. D'Alton said. "More frequently the mother is perfectly fine, but the fetus has an abnormality." In Kim Ageloff's case, both she and the twins were at risk.
"I was so sick during the first three months of the pregnancy that I became dehydrated and was put on an IV and a medical pump for over a month. It was a challenging pregnancy," Mrs. Ageloff said.
The twins were monochorionic diamniotic, meaning that they shared the same amniotic sac with only a thin membrane separating them. Because they shared the same placenta, there was vascular communication between them, which meant that what happened to one would almost certainly affect the other. And plenty happened, beginning at 12 weeks, when an ultrasound revealed edema around Twin A's head and neck.
"Mary [D'Alton] told us there was a chance that the baby would die, and that if he did, he could take the other baby with him," Mrs. Ageloff said. Meanwhile, Twin B was diagnosed with an omphalocele, which meant that his abdominal organsliver, pancreas, spleen, intestines were growing inside the umbilical cord instead of within the abdominal cavity. Dr. D'Alton recommended that they consult immediately with Charles Stolar, MD Chief of Pediatric Surgery at Morgan Stanley Children's Hospital of Columbia University Medical Center.
The Ageloffs traveled to Children's Hospital of Philadelphia (CHOP) for a second opinion. There they were given a grim prognosis for Will, as they'd named Twin B, because of his "incredible will to live," Mrs. Ageloff said. "They said he had an extremely high chance of passing away because the omphalocele was epigastricit was so high that his heart and lungs would not be able to develop properly. It could have been a risk to both Josh [aka Twin A] and me." The Ageloffs were faced with deciding whether to end Will's life in order to save Josh.
The Ageloffs decided to go ahead and meet with Dr. Stolar after receiving the dark prognosis at CHOP, mostly because of their trust in Dr. D'Alton. "Mary and her group were available to us at any time of day or night and they had helped us work through difficult decisions about going ahead with the pregnancy to this point," Mrs. Ageloff says. "While she tried not to sway us and she was always frank with us about Will and Josh's chances for life, she seemed always to believe that Will was going to liveor at least she wasn't so sure he wasn't going to live."
The subsequent meeting with Dr. Stolar was "very confusing," Mrs. Ageloff said, "because his approach was so much more positive. We wanted answers, but Dr. Stolar and Dr. D'Alton couldn't give us answers." In spite of their frustration, they "decided to leave the situation in God's hands and go full speed ahead with the pregnancy, based on what Dr. Stolar was telling us."
The goal became to get to 28 weeks with the twins still in utero. Dr. D'Alton's expert team in fetal echocardiography saw Mrs. Ageloff three times a week throughout her third trimester. "They gave us the million-dollar workup," Mrs. Ageloff said, referring to Dr. D'Alton's comprehensive healthcare group.
Tests revealed fluid inside and outside Will's omphalocele, which posed a threat to the mother and to Josh. Pressure from the fluid increased the chance of cardiac arrest. "Once again, Will's defect was a threat to his own life and his twin's," Dr. D'Alton said.
"The team focused on Josh because Will's situation was so difficult," Mrs. Ageloff said. "We all were operating under the impression that if Will made it to birth he most likely would pass away very soon afterward. It was an extremely stressful time. I was very tired, and very scared."
Week 28 came and went, with Kim Ageloff back and forth from Morgan Stanley Children's Hospital to her home in Connecticut three to four times a week. The maternal-fetal medicine team was prepared to induce delivery at any point, although the new goal was to get to week 34. "Everything below Will's lungs was outside the body cavity, and neither twin was growing properly," Mrs. Ageloff said. "We kept focusing on Josh as the healthy baby." The twins were delivered by cesarean section at week 34, on October 18, 2000.
"It was an amazing moment when I heard them cry on their own," Mrs. Ageloff said. "I'll never forget those first minutes."
However, as expected, Will's omphalocele was life-threatening. "We immediately wrapped the omphalocele in what we call a silo, a sort of tent that kept it warm and clean," Dr. Stolar said. "The idea was that we would perform surgery nearly every day to replace the organs in the body cavity and make the omphalocele smaller and smaller. Will survived by hook or by crook." The well-named baby was in the hospital for three months after his birth, and had almost 20 surgeries during that time.
Meanwhile, as Will was being transferred from the delivery room to the operating room for the first time, Dr. Stolar passed by Josh's isolette and noticed that he didn't look quite right. "There was saliva coming out of his mouth; he just wasn't breathing well. I asked the nurse to put a tube in his stomach, and it didn't go." It turned out that Josh, who all along was considered the healthy twin, had esophageal atresia with a tracheoesophageal fistula that was not diagnosed prenatally.
"Essentially, Josh was missing part of his esophagus, and the lower part of his esophagus was attached to his trachea, which goes to the lungs," Dr. Stolar explained. "Every time he breathed, air went into his stomach, and every time he swallowed, saliva came out of his mouthit had nowhere else to go. So it turned out that both twins had major problems."
Dr. Stolar operated on Josh almost immediately and checked a week later using an upper gastrointestinal series diagnostic test to make sure the esophageal defects had been repaired. The test revealed yet another surprise: a malrotation, meaning that his intestines weren't attached correctly in the abdomen. "Instead of the two attaching feet' being far apart and stable, they were close together and the bowel was twisting around its blood supply," Dr. Stolar said. Josh was whisked back to the OR for emergency surgery. Fortunately, the condition was discovered before the bowel could be affected by gangrene.
The twins were in for a bit more surgery to correct undescended testicles and hernias, but shortly after their first birthday they were thriving, and their prognosis is excellent, Dr. Stolar said.
"This is a classic example of what makes this a special hospital," Dr. Stolar said. "The parents knew this would be a challenged pregnancy from the get-go. We had the resources, perseverance, and skilled personnel, including our nurse practitioner, Laura Flanigan, RN, other specialty nurses, neonatologists, neonatal anesthesiologists, pediatric specialists and subspecialists, physical therapists, and occupational therapists. In the Ageloffs' case we also had luck. Somebody was looking out for them. This is what we mean by comprehensive."
"We were able to bring both of the boys home before Christmas," Kim Ageloff said. "They're physically a bit behind other babies, but that's to be expected. Kyle was our light through all of this."
"It's amazing that babies can experience, endure, and survive so many challenges. Their healing powers are unbelievable. Bob and I are so grateful for their strength, for Dr. Stolar and Dr. D'Alton, the Neonatal ICU nurses, and the entire team at Children's Hospital."
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