Noah's House of Hope in the Press

Upper St. Clair family hit with tragedy chooses to give back

June 19, 2014 11:08 AM

By Chasity Capasso suburbanliving@post-gazette.com

Jennifer Angelici and her son Noah Angelici, who was diagnosed with twin-to-twin transfusion syndrome, a rare disease of the placenta.

When Jennifer Angelici, a nurse at Magee-Womens Hospital, was pregnant with identical twin boys in 2004, she recalled she had a feeling that something wasnt right.

She was correct. Her boys, whom she and her husband, Adam, had already named Noah and Jackson, were diagnosed at 12 weeks in utero with twin-to-twin transfusion syndrome, a rare disease of the placenta.

The familys experience led them to create the Noah Angelici Hope Foundation to create awareness and support. The foundation will sponsor the seventh annual Noah Angelici Golf Tournament June 22-23 at Mystic Rock golf course at Nemacolin Woodlands.

Mrs. Angelici was given several options that would have meant the death of Noah, or she could have tricky in utero surgery, during which a laser cauterizes the conjoined vessels.

The Angelicis, of Upper St. Clair, did research and decided to have the operation. They flew to St. Josephs Hospital in Tampa, Fla., and had successful surgery performed by physician Rubin Quintero. Today, surgeon Stephen Emery performs this procedure at Magee-Womens Hospital.

Back in Pittsburgh, the family then met physician Frederick Sherman, president of the medical staff at the Childrens Home of Pittsburgh and director of the Cardiology Fellowship Training Program at Childrens Hospital of Pittsburgh of UPMC.

"Noah and his brother first came to me as fetuses, " Dr. Sherman said. "At this point, I was seeing their mother on a weekly basis, as she was getting ultrasounds three times a week and echocardiograms to monitor Noahs heart."

Dr. Sherman explained that in this syndrome, abnormal blood vessels develop, connecting the circulatory systems of the two babies. The result is an unequivalent exchange of blood flow, where one fetus becomes a blood donor to the other, creating serious complications that can endanger the health of both babies. In this case, Noah was the donor and the baby in the most trouble.

The boys were delivered at 35 weeks via Caesarean section on June 24, 2005. Noah weighed 2 pounds, 8 ounces, and his twin brother, Jackson, weighed 5 pounds, 12 ounces.

"After he was born, Noah was placed on a respirator because his enlarged heart was complicating his lung development, " Dr. Sherman said. "Noah had significant heart complications. Jackson was born healthy.

After Dr. Sherman made the decision for Noah to undergo heart surgery, Victor Morell, M.D., performed Noahs "coarctation of the aorta and Noahs lung surgery at Childrens Hospital.

"After the heart surgery, he was doing great, and we thought he was coming home, and he did, albeit briefly during Christmas of 2005, " Mrs. Angelici said.

On Sept. 8, 2006, Noah was admitted to Childrens Hospital in respiratory distress; his family was told he would probably grow out of the disease and have to stay only overnight for observation.

Fifteen months later, Noah was still in intensive care, unable to be taken off the respirator.

Jane Klimchak of Venetia, the boys grandmother, recalled that Noah was able to come home overnight in December 2005, but was then rushed back to the hospital.At that point he was transferred to the Childrens Home and Lemieux Family Center.

"In his 2 1/2 years of life, he was only home for maybe three months, " Mrs. Klimchak said.

Noah died in his mothers arms on Dec. 1, 2007. Death was attributed to lung complications.

"Everything he went through, all the surgeries, the poking and prodding, he never cried, " said Mrs. Angelici. "He was such a pleasant baby, so strong."

"Noahs journey was beyond your imagination, " Mrs. Klimchak said. "We were fortunate to have spent that short time with him."

After the familys struggle, the foundation was organized, directed by Mrs. Klimchak and her family.

"Jenny wants to make sure people have the funds to get care for their children, whether it be a place to stay, money for food or travel, " Mrs. Klimchak said. "She doesnt want people to have to go through what she did."

"This family is remarkable, " Dr. Sherman said. "They went through such a significant tragedy and responded by giving back. They created an organization to raise awareness of TTTS, and money for several organizations in Noahs memory."

According to the foundations website, its mission is "to honor Noah Angelicis life with the dedication of his foundation to support research toward the diagnosis, treatment and education of twin-to-twin transfusion syndrome. While doing so, we will strive to provide support and hope to the families and babies affected with this rare condition as well as those who have gone through a tragic loss."

On June 22 and 23, the seventh annual golf tournament will be held at the Mystic Rock golf course. The event begins at 7 p.m. June 22 with a welcome reception. A brunch will be held at 8 a.m. June 23. Golf begins at 10 a.m., followed by dinner and a program.

Guest speakers are Dr. Emery, of Magee, who also played a major role in Noahs life, and former Pittsburgh Steeler and family friend, Craig Wolfley.

"Ive watched their pain, yet they managed to turn a tough situation into something positive to help other families, Mr. Wolfley said.

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Cradle Will Rock 2012

It was all things Wild Wild West at this year’s Cradle Will Rock, hosted by the Twenty-Five Club of Magee-Womens Hospital of UPMC. The fabulous affair transformed Keepsake Arabians Equestrian Center in McDonald into the Old West as more than 200 ace-high attendees enjoyed classic country tunes, entertainment, and delicious grub. “The amazing evening featured an auction of custom-designed rocking horses, guests wearing cowboy boots and hats, and lots of ‘good ole-fashioned fun,’ all designed to benefit newborn medicine and research,” says Event Chair Rona Dane. —Andrea Bosco

This event is featured in the November 2012 issue of WHIRL Magazine.
To view and purchase event photos, visit the WHIRL Photo Vault.

Photograph By: Jill Kummer. Left: Gino Torriero, Mali Torriero, Jessica Russell, Jane Klimchak and Dr. Stephen Emery

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Running for Noah

Camden Seybert (Noah's 12 year old Cousin) and his Grandma (Noah's Great Aunt) along with her son Joseph and daughter Linnea are running in the Pittsburgh Marathon and raising funds for Noah's Foundation. It is amazing what two feet and an incredible heart can do. Noah never stood up let alone even take one step. Camden is putting one foot in front of the other over and over again all in Noah's Memory and our mission of blessing others.

Please join Camden in a pledge to sponsor this courageous young man and help him in his efforts to touch as many lives as possible with his marathon run for Noah. Benefiting from Camden's run will be Noah's House of Hope which supports two area's of Noah's medical journey. Dr. Stehpen Emery of Magee-Women's Hospital and his work with Twin-To-Twin Syndrome along with The Children's Home and Lemieux Family Center.

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Noah's hope Family honors memory of tot who fought to survive rare birth defect

By Denise Bachman dbachman@observer-reporter.com

BETHEL PARK - When Noah Angelici entered Children's Hospital of Pittsburgh of UPMC on Sept. 8, 2006, doctors told his parents that he'd probably stay just overnight.

But the 14-month-old ended up spending the next 15 months in pediatric intensive care, finally released at the request of his parents, Adam and Jennifer Angelici, so he could die in his Bethel Park home.

On Dec. 1, 2007, Noah passed away from complications of Twin to Twin Transfusion Syndrome. He was surrounded by medical personnel, hospice volunteers, his extended family and his identical twin brother, Jackson.

Although his life was short-lived, Noah fought a courageous battle to survive, inspiring many others along the way. His father even nicknamed him Noah Balboa, after Sylvester Stallone's character in "Rocky."

As Noah's maternal grandmother, Jane Klimchak of Venetia, said, "In the short 2 1/2 years that Noah was here physically, he lived a lifetime. He was the most incredible little boy in the world."

Twin to Twin Transfusion Syndrome is a rare condition that affects identical twins with a shared placenta. One fetus, known as the donor, continuously "gives" blood to the other twin, known as the recipient, through connecting blood vessels on the placenta, resulting in twins of markedly different sizes.

The boys were delivered at 35 weeks on June 24, 2005, after they both experienced a significant drop in amniotic fluid. Noah was the donor twin. He weighed 2 pounds, 8 ounces, and was anemic. Jackson weighed 5 pounds, 12 ounces, but he was getting too much blood.

"Jackson came out crying, then he started grunting," Jennifer said. "Noah was white as a sheet," and required an emergency intubation.

"Both babies were in bad shape," Jennifer said, but Jackson was released 10 days later, and to this day, he is a healthy, rambunctious soon-to-be 4-year-old who takes great pleasure in showing off photos of his twin brother.

To raise awareness about Twin to Twin Transfusion Syndrome and honor Noah's memory, the Noah Angelici Hope Foundation was established by Dr. Luke Taggart and Noah's family. On June 15, the second annual Noah Angelici Memorial Golf outing will be held to benefit the Children's Home & Lemieux Family Center and the Fetal Hope Foundation.

Although TTTS can occur at birth - when the umbilical cord is clamped after delivery, the other twin can get a rush of blood - Noah and Jackson were diagnosed when their mother was 12 weeks' pregnant. The original ultrasound detected a noticeable size difference in the twins, and three weeks later, another ultrasound showed they had grown farther apart.

Some physicians suggested terminating the pregnancy; another said they could tie off the amniotic fluid to Noah. Others said let it ride.

They let it ride.

Jennifer was on bedrest the entire pregnancy. She lay on her left side and drank protein shakes, and she went to Magee-Womens Hospital three times a week for ultrasounds.

While in utero, Noah developed an enlarged heart - a condition that usually affects the recipient twin - that also required weekly echocardiograms.

"At 24 weeks, they told us he wasn't going to make it," Klimchak said. "I said, 'A miracle can happen.'"

After he was born, Noah was placed on a respirator because his enlarged heart was impeding his lung development.

"With him, there were really a lot of issues," said Dr. Fred Sherman, president of the medical staff at the Children's Home and director of the Cardiology Fellowship Training Program at Children's Hospital.

Sherman said Noah was too premature to immediately undergo a heart operation, so doctors waited.

"I fear that that waiting period contributed to his later problems," Sherman said. "His major problem became lung disease. That ended up eventually taking his life."

Noah spent all but about four months of his life either in the hospital or in Transitional Infant Care at the Children's Home, where Jennifer Angelici learned to care for her son. She learned how to undress and bathe him with all the lines that protruded from his tiny body, and she learned how to change his tracheotomy and feeding tube.

"I tried to nurse him, and every once in a while he would, but there was a threat for aspiration," Jennifer said. "For four months he was intubated, so his sucking ability was not there."

When Noah came home on June 23, 2006, he was thriving. Klimchak said he loved to watch "Shrek," and she remembers his hearty belly laughs whenever certain scenes would appear.

"He had lines coming out from everywhere, but he always smiled," said Klimchak, whose memories are confirmed in the countless number of photos of Noah that hang in the Angelicis' home.

But when Noah became ill again in September 2006, he was unable to get off the ventilator.

Finally, the family, who lived in fear every day of losing their son, grandson and nephew, was told Noah wasn't going to make it.

"He was just a lovable child," Klimchak said. "Other families will be better off because Noah lived, and the Children's Home will always be a benefactor."

Shake Your Booties 2009: A Spectaculaire Event

This year, special tribute was paid to Dr. Fred Sherman, president of The Children’s Home medical staff and long-time board member, for his dedication and leadership in expanding The Children’s Home’s medical programs. Pam Schanwald, CEO, and Ranny Ferguson, president of The Children’s Home Board of Directors, presented Dr. Sherman with the honor.

Special guests Jennifer and Adam Angelici gave an inspirational and heartfelt message, thanking Dr. Sherman and The Children’s Home for the help and support they received during Jennifer’s pregnancy and upon the birth of their twin sons, one of whom had a heart condition.

Noah Angelici Hope Foundation Thanks Dr. Fred Sherman

The Noah Angelici “Hope” Foundation would like to express our warmest thanks to Dr. Fred Sherman. Dr. Sherman has touched our family with his kind heart and tireless efforts as our Noah’s Cardiologist...Friend.

The Noah Angelici “Hope” Foundation proudly sponsors the Children’s Home of Pittsburgh & Lemieux Family Center, as they provided a peaceful and caring home for Noah along his precious journey.

Click here to view Dr. Sherman's Bio