Thursday, October 28, 2010

Join Us for a Dancer Appreciation Event November 3rd!

Because of your contributions to our wildly successful inaugural year of CHICAGO Dance Marathon, we'd like to invite you and a guest for an insider's look at what we have planned for CDM 2011.


Please join us on November 3rd at Children's Memorial Hospital in Lincoln Park!


6:30 - 7 pm: Light hors d'oeuvres and drinks
7 - 7:30 pm: Meet miracle child Harlow and her family!
7:30 - 8:30 pm: Take an exclusive tour of the hospital


This event has limited availability. Please RSVP to alingris@chicagodancemarathon.org by November 1st.


About Harlow
"At four months old, Harlow was diagnosed with a grapefruit-sized solid tumor in her abdomen.  The pathology was sent across the country to determine what kind of tumor it was but it turned out that no one had ever seen anything like it before.  The closest thing it resembled was a very rare type of brain tumor.  We were referred to the oncology department at Children's Memorial Hospital and told that they would be the best to handle something of this nature." 

Wednesday, October 27, 2010

New Website and Registration Discount!

We're so excited to share that CHICAGO Dance Marathon has a brand new website!  Check it out at www.chicagodancemarathon.org.  

While you're there, sign up as a dancer for our event on March 19th.  Registration is 50% off now until November 15th!  Hurry - the discount is a limited time offer!  You can register as a team, too, so grab your friends and join today!

Monday, October 18, 2010

Date and Location for CDM 2011 Announced!

It's official- the date and location for CHICAGO Dance Marathon 2011 have been announced!  

Mark your calendars for Saturday, March 19th and plan to join us at the Sheraton Hotel right off the river in the heart of downtown Chicago!

Start thinking about all the friends you're going to recruit for your team this year!  Blog this info, tweet it, Facebook it, do whatever you need to do spread the word!

Registration details are coming soon.  Stay tuned to this blog for the latest updates, follow us on Twitter @ChicagoDM or become a fan of our Facebook page: "Chicago Dance Marathon."

For the Kids!

Thursday, October 7, 2010

Isabella and Anna Beat the Odds

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.
Rare, extraordinary, one in a million. All could describe the journey of Isabella and Anna Chou. Born prematurely with a number of medical complications between them, the girls have thrived through difficult starts to life, thanks to leading pediatric experts at Children’s Memorial Hospital.

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’ BoardMr. 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