The development will create more than 700 jobs in construction and related industries
The Children’s Hospital of Philadelphia is in the midst of a $2.6 billion expansion of its campus.
Mayor Michael Nutter, elected officials and representatives of the city’s business community joined Dr. Steven Altschuler, CEO of CHOP to celebrate the development of CHOP’s Ambulatory Care Center.
The ambulatory care center, which is currently under excavation on Civic Boulevard, will consist of a 500,000 square foot development that will provide children who need to see multiple specialists with enhanced care. The development will create more than 700 jobs comprised of direct and indirect construction jobs.
“Our ongoing expansion will create a significant number of construction and health care sector-related jobs, additional economic and community benefit to the city and most importantly, improved access to state-of-the-art, high quality medical care for children and their families,” Altschuler said during a press conference held at CHOP’s Colket Translational Research Building.
“We’re grown rapidly because the demand for patient services has continually exceeded our capacity to provide care in the most clinically-appropriate and cost-effective way possible.”
A part of CHOP’s expansion includes the newly opened Ruth and Tristram Colket Jr. Translational Research Building, which overlooks the expansion site. The $500 million facility houses pediatric research labs for cancer, diabetes, epilepsy, blindness and hemophilia.
CHOP’s new developments will extend beyond its traditional campus. CHOP plans to break ground on a new $30 million primary care facility on October 6 at 48th and Market Streets in West Philadelphia.
Mayor Nutter hailed CHOP for its commitment to the Philadelphia region.
“It means something to all of us to truly be able to say we have the best children’s hospital in the United States of America right here in the city of Philadelphia,” said Nutter.
“Two billion dollars over the course of the next four, five years is just spectacular. It will put people to work, bring better health care to this city but it also is a indication again that this is a smart city and they’re making a smart choice by investing in Philadelphia.”
During the event, Livingston White, a contractor and West Philadelphia resident discussed working on CHOP’s expansion projects since 2000.
“I feel very fortunate and thankful to have maintained employment during a time with so much economic pressure on society and unemployment at an all-time high,” White said.
With 13,000 employees, CHOP is Philadelphia’s fifth largest employer and Pennsylvania’s 21st largest employer. According to Atlschuler, CHOP added 7,000 new jobs since 2002 and has contributed $14 million per year in wage-tax revenue.
Last year, 30,000 patients were admitted to CHOP and CHOP’s network facilities received 1.6 million outpatient visits.
Law enforcement authorities have arrested and charged a suspect in the brutal slaying of a young doctor whose strangled and burning body was found in the basement of her home Monday afternoon.
Jason Smith, 36, from Crescent Lane in Levittown, Pennsylvania, was charged with murder, arson, abuse of a corpse and related offenses in the slaying of Dr. Melissa Ketunuti, 35. Smith was taken in for questioning by police at his home. His silver Ford pickup truck was also confiscated by investigators looking for evidence. Authorities said that on Thursday morning, Smith confessed to killing Ketunuti during an argument.
According to investigators, Smith was on a service call at Ketunuti’s home in the 1700 block of Naudain Street and the two were in the basement when the argument ensued. Captain James Clark of the Homicide Unit said there were no signs of sexual abuse. Investigators also believe that Ketunuti had never met her killer before.
“They got into an argument, and it went terribly wrong,” Clark said during a press conference at Philadelphia Police Headquarters. “He struck the victim and knocked her to the ground. He jumped on top of her and started strangling her with a rope. She passed out and then after binding her hands and feet he set her body on fire to cover up any DNA evidence.”
Clark said that police received an emergency call from Ketunuti’s dog walker around 12:30 p.m. regarding the fire in the basement. When firefighters arrived they extinguished the blaze and discovered the body.
Detectives examined the surveillance records from cameras in the vicinity, particularly several businesses, and learned that the victim had run errands before returning to her home. Several cameras showed Smith following Ketunuti to her home and leaving her residence after about an hour. Surveillance records also showed Smith circling her home before leaving the area. At one point during the investigation, a $33,500 reward was offered for information leading to the arrest and conviction of a suspect.
“I would first like to send my thoughts and prayers to the family, friends and neighbors of Melissa Ketunuti,” said District Attorney Seth Williams. “I know their pain must be enormous, and I hope that today’s arrest will help ease some of that pain. I also want to commend the Philadelphia Police Department’s homicide detectives who worked tirelessly to solve this case. I think too often we forget to show our gratitude to these hardworking men and women who are true heroes and whose main priority every day is to bring justice to victims and their families.”
Ketunuti had been working at the Children’s Hospital of Philadelphia for five years, serving first as a pediatrician, according to a statement released by Dr. Paul Offit, chief of the Division of Infectious Diseases.
“The entire community of the Children’s Hospital of Philadelphia is deeply saddened to learn of the tragic death of Dr. Melissa Ketunuti, a second-year infectious diseases fellow and researcher at CHOP. Our thoughts and prayers are with her family, colleagues and friends at this difficult time. Melissa was a warm, caring, earnest, bright, young woman with her whole future ahead of her,” said Offit. “But more than that, she was admired, respected and loved by those with whom she worked here at CHOP. Her death will have a profound impact on those who worked with her, and we will all miss her deeply.”
A three-year old toddler with a rare condition is in desperate need of a kidney transplant.
Jordyn Maddox of Delaware has end-stage kidney failure and is currently at the Children’s Hospital of Philadelphia.
Before Jordyn was born, doctors diagnosed her in-utero with Autosomal Recessive Polycystic Kidney Disease, a potentially deadly condition that causes low-functioning, cyst-filled kidneys. The doctors did not expect her to make it to birth. Jordyn was very sick when she was born and was not expected to live.
“Once she was born, the doctors looked at her and said there was nothing they could do. We were passing her around, saying goodbye to her,” recalled her mother, Taylor Burden.
Jordyn was placed in the hospital’s neonatal intensive care unit where she spent three months fighting to get better. After she was released from the hospital, she made it to her first birthday before she needed serious medical intervention. Shortly after her first birthday, Jordyn had to be placed on peritoneal dialysis, a type of dialysis that uses the lining of the belly to filter the blood.
About a month ago, Jordyn was admitted to CHOP after she developed an infection from the peritoneal dialysis. She’s been undergoing hemodialysis at the hospital two and half hours a day, three-days a week, for almost a month. Jordyn is now on the extensive waiting list for a deceased donor.
“Hemodialysis is the last thing that is going to maintain her levels before getting a transplant but it’s also very hard on kids, so it’s not her best option. A living donor is the best option for her,” said Burden, who has launched a movement to help Jordyn find a living organ donor candidate.
The website http://teamjordyn.intuitwebsites.com has been established to share her story.
“My ultimate goal with this is to obviously be able to find a donor for my child, but I also hope to move people with her story and get more people on board and realizing that many others are in similar situations as Jordyn and they have the ability to step up, take action, and save lives by being a living donor.”
Burden describes Jordyn as a very feisty, lovable child who is very intelligent.
“She knows a lot for her age because of all she has been through. Everybody falls in love with her [at] first sight,” said Burden noting that Jordyn is popular with many of CHOP’s nurses.
A CHOP spokesperson said the hospital could not comment on Jordyn’s situation due to patient privacy laws.
Family and friends have taken to social media to bring awareness to Jordyn’s plight.
“It’s more encouraging to know that people are supporting and encouraging us and are behind the movement to help me find Jordyn a living donor,” Burden added.
“It’s hard just knowing that she is going through this but it’s also very encouraging to see how many people are taking action.”
Burden’s push to find a donor for her daughter comes as thousands of people across the country are on the waiting list for an organ transplant. African Americans account for about 30 percent of the more than 118,000 people who are on the national waiting list according to the Organ Procurement and Transplantation Network.
National Minority Donor Awareness Week, which is observed Aug. 1-7, serves to shed light on the need for more African Americans, Hispanics and Asians to become organ and tissue donors. According to the Gift of Life, the local organ procurement organization serving Philadelphia, Delaware and New Jersey, African Americans account for 2,500 of the 6,500 people in the region who are waiting for an organ.
Another new medical facility for children is coming to West Philadelphia.
The Children’s Hospital of Philadelphia recently broke ground for the Nicholas and Athena Karabots Primary Care Center at 48th and Market streets.
Established with a $7.5 million gift from Nicholas and Athena Karabots and the Karabots Foundation of Fort Washington, the $30 million, 52,000-square-foot facility will offer top-quality pediatric care and community programs for children and families in the surrounding community.
“We are grateful that Nicholas and Athena Karabots are so passionate about ensuring all children, regardless of socioeconomic background, receive high quality care,” said Mortimer J. Buckley, chair of the board of trustees at CHOP.
“Their generous gift makes it possible for the Children’s Hospital of Philadelphia to better serve the families in West Philadelphia. We are honored to continue the Karabots’ tradition of helping children in need and will fulfill the promise of excellent care.”
As the chairman of the Spartan Organization, Nicholas Karabots has achieved prominence in the printing and publishing industry. The Karabots family is known for supporting projects focused on youth and inner-city causes.
“My wife and I are delighted to be able to support the creation of this facility that will help so many in need. The West Philadelphia community will benefit enormously with the opening of this state-of-the-art center,” said Karabots.
“I feel strongly that all children, especially those living under difficult circumstances, deserve the opportunity to live a healthy and productive life. To do this, they need to have access to good health-care services.”
Located on a four-story site, the two-story building will contain 56 child-friendly examination rooms; rooms dedicated to radiology, hearing and vision testing, and a phlebotomy laboratory.
The facility will also house community programs offered by Children’s Hospital including Early Head Start, Reach Out and Read, domestic violence education and asthma education.
The center plans to accommodate more than 45,000 outpatient visits annually.
“We are proud to create additional economic and community benefits to Philadelphia at the same time we provide a higher level of care for children,” said Dr. Steven M. Altschuler, chief executive officer of CHOP.
“This generous donation from Nicholas and Athena benefits our community on so many levels.”
Construction of the building is projected to finish in late 2012, with an opening planned for early 2013.
The principal architect for the center is Brawer & Hauptman Architects and the contractor is INTECH Construction. Stanley, Beaman and Sears are the interior design consultants and Medequip International is the medical equipment consultant. The Procz Group is serving as the building systems engineer, while the civil/structural engineer is Klein and Hoffman.
The existing CHOP Pediatric and Adolescent Care Centers at 39th and Chestnut streets and 3550 Market St. will relocate to the Karabots Center. The centers in South Philadelphia and Cobbs Creek will remain in their current locations.
When Tiersa Cross was only 24 weeks pregnant, she underwent a surgery that positively impacted her baby’s life.
Cross was referred to the Children’s Hospital of Philadelphia’s Center for Fetal Diagnosis and Treatment, when a prenatal screening test determined that her baby girl had spina bifida — a common birth defect that affects about 1,500 babies a year in the United States.
Spina bifida is a defect in which the backbone and spinal canal do not close before birth. The birth defect could cause partial or complete paralysis of the newborn’s legs, loss of bladder or bowel control, weakness of the hips and legs or feet and build up of fluid in the brain.
On October 19, Cross and her baby Madisyn Cruickshank underwent surgery at CHOP.
“They said that if I didn’t get the surgery, her chances of being able to walk would be slim to none. Closing that hole in her back was really important at that time, for her to be able to walk and also to keep fluid from retaining in her brain,” says the resident of Norristown.
“I just wanted to let her have the best life possible. I was just really looking out for her.”
While she was aware of the risk that her baby could possibly be born prematurely, Cross was more concerned about the potential outcome of the surgery.
Madisyn was born January 18 in CHOP’s Garbose Family Special Delivery Unit. Since her birth, she’s returned to the hospital every week for follow-up visits with her doctors.
“She’s doing really well. Her legs are moving. She has full bladder and bowel control,” Cross says of the baby.
Cross also noted that Madisyn doesn’t need a shunt — a surgically implanted tube that drains fluid from the brain.
“We’re optimistic that the operation [she had] before birth will help that baby, but obviously we need to do the long-term follow up. I think that it will end up being a good result,” Dr. Scott Adzick, CHOP’s surgeon-in-chief and director of the Center for Fetal Diagnosis and Treatment says of Madisyn’s surgery.
The surgical highlight comes on the one-year anniversary of a CHOP-led groundbreaking national study published in the New England Journal of Medicine, which found that performing delicate surgery in the womb could substantially improve outcomes for children with spina bifida. The Management of Myelomeningocele Study (MOMS) trial showed that surgery reduced the need to divert fluid from the brain, improved mobility and the chances that the child will be able to walk independently. CHOP worked with Vanderbilt University and the University of California San Francisco to conduct the National Institutes of Health-funded trial.
Adzick says the concept of fetal surgery arose approximately 30 years ago out of frustration by doctors who realized that they couldn’t treat the damage done to babies’ organs before birth.
After undergoing the surgical procedure, the baby’s mother is monitored very closely.
“With fetal surgery as we do it now, there is a substantial risk of pre-term birth,” said Adzick, noting that a study showed that babies who undergo the procedure were born approximately three weeks early.
Adzick said mothers who undergo this operation need to understand that the procedure leaves a scar on the uterus that can rupture during subsequent pregnancies. With that in mind, mothers who undergo this surgery must deliver their babies by Cesarean section.
According to Adzick, this year the Center for Fetal Diagnosis and Treatment will evaluate approximately 1,200 mothers from around the world who are carrying babies with birth defects.
A decision to deny a three-year-old girl a kidney transplant due to a mental disability has sparked controversy.
A doctor at the Children’s Hospital of Philadelphia has allegedly denied Amelia Rivera of New Jersey from undergoing a transplant procedure that her family says she needs to survive.
Amelia has Wolf-Hirschhorn Syndrome, a rare genetic defect that can cause physical and mental disabilities. She will need a transplant in six months to a year.
Amelia’s mother, Chrissy Rivera, posted a blog entry last describing an encounter that happened with a doctor, who she did not name, at CHOP. Rivera and her husband visited CHOP to discuss Amelia’s treatment. According to Rivera, the doctor said Amelia would not be eligible for a transplant because of the quality of her life and her mental condition.
“I put my hand up. Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded,” she wrote.
“I began to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.”
Rivera’s plight has set off an online fervor — causing Amelia’s fate to be debated in the media.
The situation spurred Sunday Stilwell to launch a campaign for Rivera to receive her transplant on Change.org.
“As a mother of two sons on the severe autism spectrum, I could not sit back and let anyone tell another special needs parent that their child is not worthy of living,” Stilwell said in a press release.
“I read Amelia’s story and imagined myself sitting across the table from a doctor and social worker telling me my boys’ lives have no value — and I knew I had to do something to make sure this never happens to another family.”
As of Jan. 19, the campaign netted more than 31,000 signatures.
According to published reports, the Riveras will meet with hospital officials next week.
Hospital officials declined to speak about Rivera’s specific case, citing patient confidentiality laws.
However, CHOP issued a statement in regard to its transplant policy.
“The Children’s Hospital of Philadelphia does not disqualify potential transplant candidates on the basis of intellectual abilities. We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities. We at CHOP are deeply committed to providing the best possible medical care to all children, including those with any form of disability,” CHOP said.
CHOP has received a flood of emails, phone calls and comments on its Facebook page from people calling for the hospital to allow Amelia to undergo the transplant procedure.
CHOP issued a statement on Facebook in response to the controversy.
“We feel and understand your frustration, but we are unable to comment publicly on individual cases. Each child is unique, and our goal is always to provide the best possible medical care for each individual patient,” CHOP said.
“Please know that CHOP strives to partner with families and make appropriate decisions based on input from many sources, none more important than the patient’s family. Anything less would be completely inconsistent with the values we work to uphold every day. We are also taking action to review all existing policies to make sure that they reflect the core values we live by, including our deep commitment to not discriminate in any way.”
The controversy comes at a time when more than 90,000 people are on the waiting list for a kidney, according to the Organ Procurement and Transplantation Network.
A new beacon for the health and well-being of children has opened in the heart of West Philadelphia.
Children’s Hospital of Philadelphia has opened the doors to the $27 million Nicholas and Athena Karabots Pediatric Care Center at 48th and Market Streets.
The 52,000-square-foot facility brings high quality pediatric care and community programs to children and families in the surrounding community.
CHOP officials, politicians, philanthropists and community members recently turned out for the center’s grand opening celebration.
“It’s already clear that the Karabots center has made a positive impact on the community, and I think it will do this for generations to come. It will improve countless lives, open up new worlds of possibility and offer more people the hope that CHOP gives patients and families every day,” Dr. Steven M. Altschuler, chief executive officer of CHOP said during the grand opening event held February 6.
“As we think about health care in the future, centers like this will really be an important part of how we think about improving the lives of children. It’s not only about healthcare, it’s about furthering development and positioning children for success in the future.”
Designed to serve more than 64,000 outpatient visits annually, the center is equipped with 56 examination rooms and rooms for radiology, hearing and vision testing and a phlebotomy laboratory.
The Karabots Center goes beyond providing basic healthcare services to provide families with community programs offered by CHOP including the Community Asthma Prevention program and the Homeless Healthcare initiative. Families can also tap into family planning services, domestic violence education, language services and medical home and care coordination.
CHOP’s Pediatric and Adolescent Care Centers at 39th and Chestnut Streets and 3550 Market Streets will relocate to the Karabots Center.
The facility was bolstered by a $7.5 million gift by Nicholas Karabots and his wife, Athena, through the Karabots Foundation. As chairman of the Spartan Organization, Karabots went from being a shoeshine boy to rising to prominence in the printing and publishing industry.
The Karabots have supported projects at the College of Physicians of Philadelphia, The Franklin Institute, the Philadelphia Museum of Art and Montgomery Hospital.
“People continually ask me why the Karabots Foundation has focused its energies and capital on projects such as this West Philadelphia facility. My response is that I grew up in South Bronx which was not at all different at that time than some of the underserved and troubled neighborhoods here in West Philadelphia, where our youth face similar if not greater challenges than I did in my troubled youth,” Karabots said.
“Like many here we had to survive and as a result I could not go on to higher education but with the help of institutions such as those we support today, I found a different life with opportunities open before me. Such opportunities both then and now, for our youth, were and still are difficult to achieve without redirection of their youthful drive.”
Mayor Michael Nutter hailed the Karabots for making such a significant investment and thanked CHOP for bringing the new facility to West Philadelphia.
“This center is the tipping point for people to understand that West Philadelphia is a place where you want to invest and more importantly a place that cares about children, that cares about family, that cares about people who live and work right here,” Nutter said.
The Karabots Center will also serve as a core location for CHOP’s medical education program. Every year, 139 residents will rotate through the center as a part of their graduate training.
The new site also serves as the hub for CHOP’s Reach Out and Read program. The national program prepares young children to succeed in school by partnering with doctors to prescribe books and encourage children to read together. Reach Out and Read is held at CHOP’s multiple pediatric and adolescent care practices in the CHOP Care Network, including four in West Philadelphia, one in South Philadelphia and one in Burlington, N.J.
For 10 year-old Tian Brittingham-Kershaw, the Karabots Center represents a place that both provides her with health care and cultivates her love for reading. Brittingham-Kershaw has been treated by a CHOP pediatrician and participating in Reach Out and Read since she was a baby. On the day of the grand opening, she was spotted in the center’s Rosenberg Reading Room. The reading nook is outfitted with shelves of children’s books.
“I read a lot. Most of the books that are here I’ve read,” said Brittingham-Kershaw as she held a copy of the childhood classic, Charlotte’s Web.
When she attended Mitchell Elementary School, Brittingham-Kershaw was often called on to read to other children. She’s currently a part of her school’s 100 Book Club.
Her mother, Tia Brittingham is proud of her daughter’s progress in reading and her ability to assist other children.
“I’m very happy that she wants to expand her mind and read. I’ve always encouraged reading. Knowledge is power. I’m very proud of her. I’m very excited that she gets to help other children,” Brittingham said.
She also appreciates having access to a new health center for her three children.
“I think it’s absolutely wonderful to have a facility like this right in the heart of West Philadelphia. I know the neighborhood needed something like this really bad. It’s nice to see such a wonderful facility provided for this area,” Brittingham added.
As September marks “National Sickle Cell Awareness Month,” volunteers and benefactors, “Ambassadors for Hope” for the Children’s Hospital of Philadelphia (CHOP) hosted their 12th Annual Blue Tag Gala on Saturday Sept. 8 to support the Comprehensive Sickle Cell Center at CHOP.
The Blue Tag Gala, previously known as the Jazz Event, was held at the grand ballroom of the Hyatt at the Bellevue at 200 South Broad St. The fundraiser gala brought a large crowd for cocktails, dinner and dancing in support of the Sickle Cell Center. All proceeds from the event support children with sickle cell disease.
Guests mingled, dined, danced to a live performance and listened closely as the program proceeded. The Rev. Charles W. Quann, pastor of Bethlehem Baptist Church, provided the invocation and guests were welcomed by CHOP’s CEO, Steven M. Altschuler M.D.
Masters of Ceremonies Joyce Evans, news anchor and reporter for WTXF’s Fox 29, and E. Seven Collins, director of urban marketing and external relations at Radio One Philadelphia, carried the program through.
Kwaku Ohene-Frempong, M.D., founder of the Comprehensive Sickle Cell Center, is professor of pediatrics at CHOP and president of the Sickle Cell Foundation of Ghana. As a carrier of sickle cell himself, Dr. Ohene-Frempong is dedicated both to his work at CHOP and his home country, Ghana, where he conducts research and clinical support. He spoke to the room sharing his experiences both at CHOP and Ghana and the passion he has for his work.
Featured speaker, Kim Smith Whitley, M.D., the director of the Comprehensive Sickle Cell center and clinical director of the Division of Hematology of CHOP, shared what the impact of the disease has on a person’s life, the importance of blood donors and the progression of CHOP’s program. Early in her speech she noted, “Chop serves 1,100 children with sickle cell disease — when I came in 1992, we provided care for 325.”
“Sickle cell disease is an inherited blood condition, you’re born with it. We’ve come so far to improve the quality of life, but it’s still not enough,” she said. “They’re still unfortunately dying at early ages.”
Dr. Smith-Whitley, associate professor of Pediatrics, focuses her clinical and research on sickle cell survivorship.
Many guests wore the color blue, as it was encouraged, in honor of the “Blue Tag.” The “Blue Tag” is significant because when blood donors donate, they can ensure their donation goes to help patients with sickle cell, by asking for the “Blue Tag.” This will notify the American Red Cross the donation is specifically designated for sickle cell efforts.
When Nana Kwabena Tuffuor was diagnosed with sickle cell disease at two years old, his family moved to Bucks County from Cleveland, Ohio to be near the Comprehensive Sickle Cell Center.
Tuffuor took a unique approach to his speech and asked the guests to do an “exercise.”
“I’m going to ask you guys to close your eyes for a minute and take a deep breath in,” he instructed the crowd. “With every breath you inhale becomes peace and tranquility, for every breath you exhale, stress and worry leaves our body.”
The exercise was aimed to have guests identify with how Tuffuor felt at his younger brother’s bedside, when he was dying from sickle cell disease. Tuffuor has been a patient at CHOP throughout his years, and both he and his brother suffered from sickle cell disease. He shared the strained relationship he had with his brother and how they made amends before he passed away. He also expressed the close relationship he had with the CHOP doctors and his positive experiences there.
Tuffuor, now living in New York City, uses his musical and artistic talent to spread awareness for sickle cell disease.
“I went to Penn as an undergrad pre-med, I’m not doing anything pre-med-related right now—one of my burning passions is music,” he said. “I’m a music producer and right now I’m working on John Legend’s album - but beyond that I look at myself as being an art activist—not art for art sake, art for a tangible change.”
Lynn Johnson-Porter, executive director of development for Clinical Support and Major Gifts of CHOP Foundation, felt this gala brewed a lot of enthusiasm.
“I think it was inspiring and enlightening,” she said. “It’s the largest audience ever and we’re looking to build on the enthusiasm.”
The Children’s Hospital of Philadelphia has marked another major milestone.
CHOP celebrated the 1000th delivery in the world’s first birth facility exclusively for mothers carrying babies with known birth defects.
Babies who are delivered in CHOP’s Garbose Family Special Delivery Unit are prenatally diagnosed with birth defects such as spina bifida or congenital heart disease and will either undergo fetal surgery to treat the condition before birth or need immediate specialized care after birth.
The 1000th delivery was a newborn prenatally diagnosed with a congenital heart defect. Kathy Banks of New Britain, Pa., was nine weeks into her pregnancy when she and her husband Andrew learned they were expecting twins. Their 20-week ultrasound raised some concerns about one of the twin’s hearts, and their doctor referred the Banks to CHOP’s Fetal Heart Program for further evaluation. CHOP’s team found that although Banks’ daughter was developing normally, their son had Tetralogy of Fallot, a serious structural malformation of the heart.
“I was immediately devastated. My first thought was, ‘What is the mortality rate?’” Banks said.
“They were able to tell me it was fixable and he would need open heart surgery. It’s just scary for a newborn to have that procedure.”
However after CHOP’s team gave her the details about the procedure, Banks said she had no reservations about delivering at CHOP and having the baby undergo surgery.
“I’m just happy about the level of expertise that I am able to get at CHOP. It was really refreshing to know that I could deliver and he’d be nearby,” says Banks.
Obstetrician Jodi Slepian and her team performed a cesarean delivery in the early hours of March 20 and the babies were born eight weeks early. Angela Rose and Liam Andrew Banks were born within seconds of each other, both only weighing a little over three pounds. Liam was born pink and active. He undergoes heart surgery at CHOP in a few weeks.
Dr. Jack Rychik, director of the Fetal Heart Program, said babies diagnosed with birth defects in utero and their moms need specialized obstetrical services, including prenatal and delivery care.
“Without the Special Delivery Unit and the immediate care offered by experienced specialists in pediatric cardiology and neonatology all under one roof, the Banks’ outcome could have been much different,” Rychik said.
According to Dr. Julie S. Moldenhauer, CHOP Maternal Fetal Medicine/Reproductive Genetics specialist and medical director of the Special Delivery Unit, approximately one in 33 babies are diagnosed with a birth defect each year.
“Traditionally these mothers will give birth in one hospital and their newborn will be transferred to a specialized pediatric hospital shortly after delivery. The Garbose Family Special Delivery Unit changed that by allowing for mother and baby to be simultaneously cared for at one institution by a team with great experience and expertise,” Moldenhauer said.
The Special Delivery Unit opened in 2008 and is a delivery arm of CHOP’s Center for Fetal Diagnosis and Treatment, which has been providing care for women expecting babies diagnosed with fetal conditions for more than 16 years. Established in 1995, the center has welcomed more than 12,000 expectant parents and received referrals from all 50 states and more than 50 countries.
The eight-bed labor and delivery unit was the first of its kind to exclusively care for babies born with a wide range of birth defects, genetic conditions and fetal conditions unique to complicated twin pregnancies.
“When we opened the Garbose Family Special Delivery Unit, we anticipated that this unique, multidisciplinary approach would improve outcomes for mother and baby before, during and after birth,” said Dr. N. Scott Adzick, surgeon-in-chief at CHOP and medical director of the Center for Fetal Diagnosis and Treatment.
The Special Delivery Unit is named after the Garbose Family. In 1988, during a routine pregnancy ultrasound, Lynne and Bill Garbose learned that their first baby, Emily, would be born with a very rare and fatal heart defect. She would require sophisticated care, and the Garboses were told that their only option would be for her to deliver the baby in a hospital near their home in Washington, D.C., and then have Emily transported to the pediatric hospital 30 minutes across town. Three days after she was born, Emily died in her father’s arms.
When the Garboses returned to Philadelphia and met with Adzick and Lori Howell they learned about their vision to create a delivery unit within CHOP’s Center for Fetal Diagnosis and Treatment. They provided the lead gift to create the Garbose Family Special Delivery Unit.
“On the occasion of the Special Delivery Unit’s 1000th delivery, we are so proud to be associated with the dedicated, multidisciplinary team of physicians, nurses and other staff who work there,” said Lynne Garbose, a CHOP board member.
“We remember vividly the afternoon many years ago when Dr. Adzick and Lori Howell laid out their thoughts and plans for the world’s first special delivery unit. We and thousands of parents and their children are so grateful for their team’s vision, dedication and perseverance.”
When Malakiyah Johnson was constantly throwing up for a week, his family knew something was wrong.
Subsequent testing would later reveal that the three-year old had pediatric hepatoblastoma, a cancer of the liver. Since his diagnosis in April, Johnson has undergone a surgery at Children’s Hospital of Philadelphia to remove two-thirds of his liver. Now he is getting ready to start his fourth round of chemotherapy. Hepatoblastoma is a childhood cancer that primarily affects children from infancy to about five years of age.
Malakiyah’s mother Shana Yee feared the worst when she learned that he has a one in 10 chance of survival. Thus far, he’s faring well. Sept. 11 marked his third birthday. While Malakiyah is too young to realize what is going on, Yee says he does find being poked with needles traumatizing.
“Everything is looking up so far. He’s beating the odds — so far,” says Yee.
Yee is sharing her story as a part of CHOP’s Childhood Cancer Awareness Month campaign. CHOP has launched “30 Days, 1 Cause,” an advertising and social media campaign to bring the issue of funding for pediatric cancer research to the forefront.
Yee is appreciative of CHOP’s efforts to raise awareness around the issue of childhood cancer.
“Anything that helps people be aware, I’m all for it. It just helps to get our story out there. It needs to get out there because people need to be aware of the things that could happen and they need to keep a closer eye on their kids,” says Yee, who is a Montgomery county resident.
“I knew that cancer was out there. I knew that it could affect anybody, but I never knew that cancer affected kids the way it did, until I started coming to CHOP.”
Cancer is the leading cause of death in children under the age of 15. While significant progress has been made in the last 50 years, 20 percent of children diagnosed with cancer still die from the disease. Children diagnosed with cancer are often treated with drugs developed more than 30 years ago, which may cure their cancer but may harm developing healthy cells. To that end, CHOP researchers are working to find new therapies. The push for new therapies comes at a time when funding allocations from the National Institutes of Health are shrinking due to the challenging economic times.
“We can’t move things forward without really significant research, and the research costs a lot of money. Children need different kinds of treatment than adults with cancer. There’s been an explosion in new kinds of cancer drugs out there but we really need the research funding and the ability to do the research to see which of these drugs are appropriate for the children’s cancers,” says Dr. Ann Reilly, medical director, oncology at CHOP.
“In addition to looking for new therapies we are always looking for therapies that are better tolerated, with less side effects so that as children grow up, they grow healthier with less long term problems.”
According to Reilly, CHOP treats approximately 450 children who are newly diagnosed with cancer per year. While brain tumors are the most prevalent among children, CHOP specialists are also treating solid tumors of the organs, leukemias and lymphomas.
The “30 Days, 1 Cause” campaign encourages the community to support pediatric cancer research and survivorship programs by taking steps such as donating to the Cancer Center at CHOP or by participating in the Four Seasons Philadelphia Parkway Run/Walk on September 30.
For information about the campaign, visit www.30days1cause.org.