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| After facing serious health challenges as premature infants, twins Isabella and Anna Chou are healthy and happy little girls today, thanks to the care they received at Children’s Memorial. |
Five months into her pregnancy, Sohyun Chou and her husband Wise learned they were having monoamniotic twins, a rare type of twins who share the same amniotic sac. They also received sobering news: the most common complication is umbilical cord entanglement and the mortality rate is 50 percent.
While in the womb, Isabella was diagnosed with mirror image dextrocardia, meaning the heart formed on the opposite (right) side of her body. Anna was diagnosed with an encephalocele, a rare sac-like protrusion of the brain through an opening in the skull. The main concern for Anna was whether the encephalocele was covered with skin or exposed, which couldn’t be confirmed until she was born.
“It was all so shocking. I never thought we would have twins, and certainly didn’t anticipate all these complications,” says Sohyun. “Everyone we knew was having perfectly healthy babies.”
Children’s Memorial’s Division of Neonatology, led by Robin Steinhorn, MD, is devoted to treating newborns like Anna and Isabella who require the highest level of expertise and care. Each year, the neonatal intensive care unit (NICU) team cares for approximately 600 critically ill newborns, babies who are transferred from area hospitals that cannot meet their complex needs.
The girls were born six weeks prematurely at Prentice Women’s Hospital in downtown Chicago, where Children’s Memorial neonatologists work closely with their Prentice colleagues, rotating service between the two hospitals’ NICUs. Isabella was unable to breathe on her own and needed to be transferred to the NICU at Children’s Memorial. Anna, whose encephalocele fortunately was covered, remained at Prentice to grow and gain strength. “It was heartbreaking to have the twins separated,” says Sohyun. “The girls hadn’t met each other outside of the womb.”
Sohyun and Wise also learned that Isabella had only one lung as well as an extremely narrow trachea, which made it impossible for her to breathe unaided. They met with Dr. Steinhorn, who arranged a consultation with Carl L. Backer, MD, head of the Division of Cardiovascular-Thoracic Surgery, and Lauren D. Holinger, MD, head of the Division of Otolaryngology.Dr. Backer, a leading expert in treating Isabella’s extremely rare condition and the A.C. Buehler Professor of Surgery, explained that he would perform a rare procedure, a slide tracheoplasty. In this operation the trachea is initially cut in half and then each half is cut vertically. The two sections “slide” together to create a new trachea that is half as long but with four times the internal diameter.
Dr. Holinger cautioned Sohyun and Wise of a tough road ahead with a host of potential complications and a long recovery for Isabella. The primary concern was the formation of scar tissue, which could necessitate repeated surgeries. “We were nervous, but the fact that Dr. Backer and Dr. Holinger are so well-known definitely made us feel a lot better,” says Wise.
At only five days of age and weighing less than five pounds, Isabella underwent an intensive six-hour surgery performed by Dr. Backer and Dr. Holinger to reconstruct her trachea. The surgery required great precision, as her trachea ring was about the diameter of a Cheerio®.
Despite the risks and expected complications, Isabella’s recovery was phenomenal. “Hers was one of the best recoveries I’ve ever seen for this procedure,” says Dr. Holinger, the Paul H. Holinger, MD Professor of Pediatric Otolaryngology.
When she was two months old, Isabella came home for the first time and was finally reunited with her sister. Anna, who had been home since she was three weeks old, underwent surgery at five months old to remove the encephalocele on her head.
Isabella and Anna, now 2½ years old, love to play together and speak their “twin talk.” They are catching up to their peers, thanks to early intervention through speech, physical, developmental and occupational therapies.
Dr. Steinhorn, the Raymond and Hazel Speck Berry Professor of Neonatology, recently ran into Anna and Isabella in the hospital lobby and says she could not believe her eyes. “It was amazing to see these girls, who were so ill as infants, running around as toddlers.”
Because she is living with one lung, Isabella can become winded if she overexerts herself, but is just as active as her sister, if not more so. All in all, they are healthy, happy and show few signs of their complex medical journeys.
“As neonatologists, our mindset is different than it was 10 years ago,” says Dr. Steinhorn. “Survival is no longer the only desired outcome; it’s about finding ways to increase the quality of children’s lives. We want to see former NICU babies running around on the playground and thriving at school. Anything less than a full life is unacceptable to us.”
Dr. Steinhorn looks forward to the completion of Ann & Robert H. Lurie Children’s Hospital of Chicago in 2012, and what it will make possible. “Our new facility and location will make us whole,” says Dr. Steinhorn. “It will allow mothers and babies, siblings and families, to stay together. It will enable us to deliver the full continuum of care, beginning with fetal life, and to collaborate with our clinical and research colleagues in ways we can’t do now because of the distance between our institutions.”
Sohyun and Wise are especially excited about the private rooms planned for the new NICU, along with its convenient location next to Prentice. “It will be so great for new parents to have that privacy and closeness, especially for recovering moms to be able to visit their babies,” says Sohyun. “It will help the whole family heal better, both physically and emotionally.”
Neonatal care at Children’s Memorial is generously supported by the Founders’ Board, Mr. and Mrs. Dennis J. Keller, Wood Family Foundation, Children’s Research Foundation, Inc., Digital Printing Center, Inc., Emanuel J. Petru Family Foundation, the Searle Family, Mr. and Mrs. K. Jay Weaver and Joyce H. Williams.
This article originally appeared in the Fall 2010 issue of Hero
Dr. Steinhorn, the Raymond and Hazel Speck Berry Professor of Neonatology, recently ran into Anna and Isabella in the hospital lobby and says she could not believe her eyes. “It was amazing to see these girls, who were so ill as infants, running around as toddlers.”
Because she is living with one lung, Isabella can become winded if she overexerts herself, but is just as active as her sister, if not more so. All in all, they are healthy, happy and show few signs of their complex medical journeys.
“As neonatologists, our mindset is different than it was 10 years ago,” says Dr. Steinhorn. “Survival is no longer the only desired outcome; it’s about finding ways to increase the quality of children’s lives. We want to see former NICU babies running around on the playground and thriving at school. Anything less than a full life is unacceptable to us.”
Dr. Steinhorn looks forward to the completion of Ann & Robert H. Lurie Children’s Hospital of Chicago in 2012, and what it will make possible. “Our new facility and location will make us whole,” says Dr. Steinhorn. “It will allow mothers and babies, siblings and families, to stay together. It will enable us to deliver the full continuum of care, beginning with fetal life, and to collaborate with our clinical and research colleagues in ways we can’t do now because of the distance between our institutions.”
Sohyun and Wise are especially excited about the private rooms planned for the new NICU, along with its convenient location next to Prentice. “It will be so great for new parents to have that privacy and closeness, especially for recovering moms to be able to visit their babies,” says Sohyun. “It will help the whole family heal better, both physically and emotionally.”
Neonatal care at Children’s Memorial is generously supported by the Founders’ Board, Mr. and Mrs. Dennis J. Keller, Wood Family Foundation, Children’s Research Foundation, Inc., Digital Printing Center, Inc., Emanuel J. Petru Family Foundation, the Searle Family, Mr. and Mrs. K. Jay Weaver and Joyce H. Williams.
This article originally appeared in the Fall 2010 issue of Hero
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