Special Friends
Hartford Courant
April 30, 2005
By CHRISTINE DEMPSEY, Courant Staff Writer
Krista and Rob Tuohey faced the challenge of a lifetime. Krista was about to give birth to a baby who might not be able to breathe.
Their unborn child, Gabriella, would likely be hooked up to a heart and lung machine in Boston after birth because of a birth defect called congenital diaphragmatic hernia, or CDH. One child in 2,500 to 5,000 has it.
The Manchester couple and their 2-year-old, Alyssa, had endless support from families and friends as they prepared to spend months in Boston. But the complicated disease, and its symptoms and treatment, are hard to grasp. And who, really, would know what Krista was going through?
One Saturday in late February, that question was answered.
A friend of Rob's told him he heard about another Manchester family who was going through the same thing. Not only that, their baby was born earlier in the month with the same birth defect, at the same hospital where Krista was headed, to someone she knew from high school: Kristin Aitken.
"I just couldn't believe it, because it was such a coincidence," she remembers thinking. "I was floored."
She quickly e-mailed a mutual friend of Kristin's from Manchester High School, and confirmed it. She and Kristin connected. It turned out, their husbands, Rob Tuohey and Kyle Aitken, knew each other by sight from softball.
Now, as the two families struggle through their newborns' recoveries at Children's Hospital Boston, they have bonded. The Aitkens also have another young child, Jeremy, 3, in addition to their newborn, Paige. Privacy laws kept the hospital from revealing the families' shared predicament.
"When I'm crying and I'm upset, and I want to scream and yell and throw things, who else is going to understand what I'm going through but Kristin?" asked Krista.
Two babies with the same life-threatening condition, from the same town, born a month apart in the same place is "extremely unusual," said Dr. Terry Buchmiller of Children's Hospital Boston, one of the doctors who helped keep Paige alive.
Both Gabriella and Paige were diagnosed in the womb with CDH, which means each had a hole in her diaphragm.
Through the hole migrated organs from the lower part of each child's abdomen. In Paige and Gabriella's cases, those organs included a good portion of the liver and intestines. Once the organs are in the chest, they compress the lungs, preventing them from growing properly. This makes it difficult, if not impossible, for the baby to take a first breath. Doctors don't know what causes the condition.
Gabriella's left lung was crushed, Paige's right lung was squeezed. Before she was born, doctors estimated that Gabriella, called Gabby by her parents, would have 21 percent of her lung capacity. Paige would have only 11 percent.
The Tuoheys were the first to be diagnosed. Krista Tuohey's ultrasound showed a problem when she was 18 weeks' pregnant. She did some research on the Internet and came across Dr. Jay Wilson of Children's Hospital Boston's Advanced Fetal Care Center. She sent him an e-mail and he responded within an hour, she said.
Gabriella's condition was labeled "moderately severe."
The Aitken diagnosis came much later in Kristin's pregnancy, at 33 weeks. Staff members at the fetal care center had to scramble to form a team and coordinate with Brigham and Women's Hospital, where Paige was to be delivered through a special type of C-section, said nurse Donna Morash. Both babies were to be brought to Children's over a bridge connecting the two hospitals.
Paige's condition was labeled severe. Kristin and Kyle were told Jan. 24 that she had a 50-50 chance of surviving.
The doctors decided they would have to put Paige on a heart and lung machine called ECMO, for extracorporeal membranous oxygenation. The machine puts oxygen into the patient's blood.
On Feb. 17, a team of 25 medical professionals rushed to partially deliver Paige and - with the umbilical cord still attached - connect her to the ECMO machine. Children's Hospital Boston is one of a handful of hospitals in the country to perform the delicate process, called ex-utero intrapartum treatment.
Paige was stabilized and brought to Children's Hospital, where surgeons performed yet another critical surgery. They moved her shifted organs to their proper locations and patched the hole in her diaphragm. Paige remained on the machine under heavy sedation for 15 days.
Kristin e-mailed Krista a picture of Paige on the heart and lung machine. The sight of the tiny baby hooked up to the 6-foot-tall machine, its snaking tubes turned crimson from blood, frightened her, Krista said.
"We first connected a week before we were supposed to come [to Boston], Krista said. "And we had talked about how we hadn't bought anything for the babies. And I remember Kristin saying she had bought Paige one outfit, and she said `it is going to be the outfit I will bury her in if she doesn't make it.'"
Krista began to dilate well before her due date, so the Tuoheys went to Boston March 9, earlier than they expected. Like the Aitkens, they stayed nearby at the Devon Nicole House, a hospital-owned facility for patients' families.
Doctors decided Gabriella could be delivered naturally, as long as a heart and lung machine would be at the ready. When Krista did not show signs of active labor, she kept her daughter Alyssa with her, but sent her husband home Friday, March 18, for the weekend.
When Krista's water broke at 1 a.m., it was the Aitkens she leaned on. Kyle stayed at Devon Nicole House to watch Alyssa while Kristin, who was recovering from the C-section, took Krista to Brigham and Women's.
"So she was there for my epidural," Krista said. "And she's like: `It's going to be OK, honey.'"
"I'm crying," Kristin said. "We're holding each other's hands."
Gabriella came out blue. Doctors gave her chest compressions. They put a breathing tube down her throat, Krista said.
"They were a little nervous when she was first born," she said. "But they intubated her and she bounced back. So all of the sudden, they're like, `Oh, my God, she's doing awesome. She didn't have to go on ECMO.'"
Gabriella had surgery to reposition her organs and patch the hole three days after birth. But about a week after surgery, she took a turn for the worse and had to be hooked up to the heart and lung machine.
"That was the first time since she was born that I thought, `We're going to lose our daughter,'" Krista said.
Gabriella was taken off the machine after seven days. On April 16, she was well enough to be transferred to the post-surgical wing from the intensive care unit.
But, like Paige and many infants with CDH, there are obstacles to recovery. Gabriella was returned to intensive care twice because of lung collapses; Paige has had to fight off a virus.
Buchmiller said most babies with the birth defect grow up "functionally normal," but many struggle with short-term problems, like reflux, and lasting conditions such as asthma and minor hearing loss. As they grow, some children have to have their patches repaired.
There is a financial impact, too. While the bulk of the families' medical costs have been covered by insurance, there are other expenses associated with their trips to, and stays in Boston.
On April 22, Gabriella and Paige were taken to the activity room in the post-surgical wing for a photo shoot for this story. It was the first time they were in the same room.
Paige's big brother Jeremy resisted posing, raking Kristin's neck with his little fingers. Alyssa bawled as her bracelet broke, shooting colorful beads across the floor.
Tethered to portable oxygen tanks, the newborns slept through the commotion.
"You guys finally get to see each other and you're both sleeping," Krista said.
Most expect there will be plenty of time for the babies to get to know each other.
"I think they have become really good friends," Morash, the nurse, said of the two families. "I'm sure it's a lifelong friendship for them now, no matter what happens."
A discussion of this story with Courant Staff Writer Christine Dempsey is scheduled to be shown on New England Cable News each hour Monday between 9 a.m. and noon.
Donations to help defray costs for the Tuoheys may be sent to the Gabriella Hope Fund at any Webster Bank or to Rachael Shove, 101 Eaton Ave., Meriden, 06450.
Donations for the Aitkens, made out to Paige Aitken, may be sent to Nutmeg State Federal Credit Union, 270 Broad St., Manchester, CT 06040.
A fundraiser is planned for the Aitkens from 5-11 p.m. June 18 at the Polish Club in Montville, sponsored by the Montville Lions Club. For more information, contact Kathy Fotta, 860-848-2262.
Hartford Courant
April 30, 2005
By CHRISTINE DEMPSEY, Courant Staff Writer
Krista and Rob Tuohey faced the challenge of a lifetime. Krista was about to give birth to a baby who might not be able to breathe.
Their unborn child, Gabriella, would likely be hooked up to a heart and lung machine in Boston after birth because of a birth defect called congenital diaphragmatic hernia, or CDH. One child in 2,500 to 5,000 has it.
The Manchester couple and their 2-year-old, Alyssa, had endless support from families and friends as they prepared to spend months in Boston. But the complicated disease, and its symptoms and treatment, are hard to grasp. And who, really, would know what Krista was going through?
One Saturday in late February, that question was answered.
A friend of Rob's told him he heard about another Manchester family who was going through the same thing. Not only that, their baby was born earlier in the month with the same birth defect, at the same hospital where Krista was headed, to someone she knew from high school: Kristin Aitken.
"I just couldn't believe it, because it was such a coincidence," she remembers thinking. "I was floored."
She quickly e-mailed a mutual friend of Kristin's from Manchester High School, and confirmed it. She and Kristin connected. It turned out, their husbands, Rob Tuohey and Kyle Aitken, knew each other by sight from softball.
Now, as the two families struggle through their newborns' recoveries at Children's Hospital Boston, they have bonded. The Aitkens also have another young child, Jeremy, 3, in addition to their newborn, Paige. Privacy laws kept the hospital from revealing the families' shared predicament.
"When I'm crying and I'm upset, and I want to scream and yell and throw things, who else is going to understand what I'm going through but Kristin?" asked Krista.
Two babies with the same life-threatening condition, from the same town, born a month apart in the same place is "extremely unusual," said Dr. Terry Buchmiller of Children's Hospital Boston, one of the doctors who helped keep Paige alive.
Both Gabriella and Paige were diagnosed in the womb with CDH, which means each had a hole in her diaphragm.
Through the hole migrated organs from the lower part of each child's abdomen. In Paige and Gabriella's cases, those organs included a good portion of the liver and intestines. Once the organs are in the chest, they compress the lungs, preventing them from growing properly. This makes it difficult, if not impossible, for the baby to take a first breath. Doctors don't know what causes the condition.
Gabriella's left lung was crushed, Paige's right lung was squeezed. Before she was born, doctors estimated that Gabriella, called Gabby by her parents, would have 21 percent of her lung capacity. Paige would have only 11 percent.
The Tuoheys were the first to be diagnosed. Krista Tuohey's ultrasound showed a problem when she was 18 weeks' pregnant. She did some research on the Internet and came across Dr. Jay Wilson of Children's Hospital Boston's Advanced Fetal Care Center. She sent him an e-mail and he responded within an hour, she said.
Gabriella's condition was labeled "moderately severe."
The Aitken diagnosis came much later in Kristin's pregnancy, at 33 weeks. Staff members at the fetal care center had to scramble to form a team and coordinate with Brigham and Women's Hospital, where Paige was to be delivered through a special type of C-section, said nurse Donna Morash. Both babies were to be brought to Children's over a bridge connecting the two hospitals.
Paige's condition was labeled severe. Kristin and Kyle were told Jan. 24 that she had a 50-50 chance of surviving.
The doctors decided they would have to put Paige on a heart and lung machine called ECMO, for extracorporeal membranous oxygenation. The machine puts oxygen into the patient's blood.
On Feb. 17, a team of 25 medical professionals rushed to partially deliver Paige and - with the umbilical cord still attached - connect her to the ECMO machine. Children's Hospital Boston is one of a handful of hospitals in the country to perform the delicate process, called ex-utero intrapartum treatment.
Paige was stabilized and brought to Children's Hospital, where surgeons performed yet another critical surgery. They moved her shifted organs to their proper locations and patched the hole in her diaphragm. Paige remained on the machine under heavy sedation for 15 days.
Kristin e-mailed Krista a picture of Paige on the heart and lung machine. The sight of the tiny baby hooked up to the 6-foot-tall machine, its snaking tubes turned crimson from blood, frightened her, Krista said.
"We first connected a week before we were supposed to come [to Boston], Krista said. "And we had talked about how we hadn't bought anything for the babies. And I remember Kristin saying she had bought Paige one outfit, and she said `it is going to be the outfit I will bury her in if she doesn't make it.'"
Krista began to dilate well before her due date, so the Tuoheys went to Boston March 9, earlier than they expected. Like the Aitkens, they stayed nearby at the Devon Nicole House, a hospital-owned facility for patients' families.
Doctors decided Gabriella could be delivered naturally, as long as a heart and lung machine would be at the ready. When Krista did not show signs of active labor, she kept her daughter Alyssa with her, but sent her husband home Friday, March 18, for the weekend.
When Krista's water broke at 1 a.m., it was the Aitkens she leaned on. Kyle stayed at Devon Nicole House to watch Alyssa while Kristin, who was recovering from the C-section, took Krista to Brigham and Women's.
"So she was there for my epidural," Krista said. "And she's like: `It's going to be OK, honey.'"
"I'm crying," Kristin said. "We're holding each other's hands."
Gabriella came out blue. Doctors gave her chest compressions. They put a breathing tube down her throat, Krista said.
"They were a little nervous when she was first born," she said. "But they intubated her and she bounced back. So all of the sudden, they're like, `Oh, my God, she's doing awesome. She didn't have to go on ECMO.'"
Gabriella had surgery to reposition her organs and patch the hole three days after birth. But about a week after surgery, she took a turn for the worse and had to be hooked up to the heart and lung machine.
"That was the first time since she was born that I thought, `We're going to lose our daughter,'" Krista said.
Gabriella was taken off the machine after seven days. On April 16, she was well enough to be transferred to the post-surgical wing from the intensive care unit.
But, like Paige and many infants with CDH, there are obstacles to recovery. Gabriella was returned to intensive care twice because of lung collapses; Paige has had to fight off a virus.
Buchmiller said most babies with the birth defect grow up "functionally normal," but many struggle with short-term problems, like reflux, and lasting conditions such as asthma and minor hearing loss. As they grow, some children have to have their patches repaired.
There is a financial impact, too. While the bulk of the families' medical costs have been covered by insurance, there are other expenses associated with their trips to, and stays in Boston.
On April 22, Gabriella and Paige were taken to the activity room in the post-surgical wing for a photo shoot for this story. It was the first time they were in the same room.
Paige's big brother Jeremy resisted posing, raking Kristin's neck with his little fingers. Alyssa bawled as her bracelet broke, shooting colorful beads across the floor.
Tethered to portable oxygen tanks, the newborns slept through the commotion.
"You guys finally get to see each other and you're both sleeping," Krista said.
Most expect there will be plenty of time for the babies to get to know each other.
"I think they have become really good friends," Morash, the nurse, said of the two families. "I'm sure it's a lifelong friendship for them now, no matter what happens."
A discussion of this story with Courant Staff Writer Christine Dempsey is scheduled to be shown on New England Cable News each hour Monday between 9 a.m. and noon.
Donations to help defray costs for the Tuoheys may be sent to the Gabriella Hope Fund at any Webster Bank or to Rachael Shove, 101 Eaton Ave., Meriden, 06450.
Donations for the Aitkens, made out to Paige Aitken, may be sent to Nutmeg State Federal Credit Union, 270 Broad St., Manchester, CT 06040.
A fundraiser is planned for the Aitkens from 5-11 p.m. June 18 at the Polish Club in Montville, sponsored by the Montville Lions Club. For more information, contact Kathy Fotta, 860-848-2262.
Copyright ©, 2005, Hartford Courant. Reprinted with permission.