More than 20 years ago, Kelly Heffernan walked out of an ultrasound appointment feeling utterly lost. She had just learned that her unborn daughter, Emma Grace, had a mass on her right lung. Her local doctors told her that her daughter probably would not survive, and that she should consider ending the pregnancy.
Kelly found her way to Children’s Hospital of Philadelphia (CHOP), where a brand-new Center for Fetal Diagnosis and Treatment had recently been established. It was there that she found the hope she so desperately needed.
The Center team evaluated Emma, and initially diagnosed her with a bronchopulmonary sequestration (BPS), a type of fetal lung lesion. Kelly returned home with a treatment plan in place, including close monitoring of the remainder of her pregnancy, with plans to surgically remove the mass on Emma’s lung after delivery.
Emma was born on Oct. 28, 1996 at a hospital near the family’s home in New York. After delivery, Emma had bouts of rapid breathing and ended up in the ER. She was sent back to CHOP for further evaluation due to concern for air trapping and progressive enlargement of the mass. At CHOP, Emma had surgery to remove the mass, and the medical team discovered that she actually had a combination of a sequestration and a congenital cystic adenomatoid malformation (CCAM). This rare combined lesion had only just recently been described by researchers at CHOP.
Now, nearly 20 years old, Emma is a junior at the University of Rhode Island where she is harnessing her love for the outdoors into the study of Environmental Science.
“Nothing reminds me of how fleeting life is more than being in nature,” Emma says. “I’m really interested in Environment and Community planning. I love maps and problem solving and I think I could make a great career out of it, but we’ll see. You never know what life has in store!”
Throughout the years, Emma’s family has sent updates to the team at CHOP, sharing highlights as she grew into a beautiful young woman. In one recent letter, Kelly reflected on that journey.
As told by Emma’s mom, Kelly:
When I became pregnant with my very first baby in 1996, I was overjoyed. The words I had so desperately waited to hear, "You are pregnant with a baby girl," were immediately followed by, "but your baby is very sick."
During a routine ultrasound, a mass was found in Emma's right lung, along with a host of other medical problems. All consults from pulmonary specialists were negative; during one conversation, terminating the pregnancy was suggested.
We were terrified at the uncertainty that lay before us. All I knew was that I would not give up on this little one. I didn't know her name yet, I didn't know what she would look like, I didn't know all the ways she would forever change our lives for the better, but I knew I would fight to give her the best possible chance for survival. I wouldn't stop until I knew, even if the outcome might not be what we had hoped, that I had her in the hands of the most talented and knowledgeable healthcare team available.
Our lives would be forever changed the day we walked through the doors of CHOP. At a time of such anxiety and fear of the unknown, we met the team at the Center for Fetal Diagnosis and Treatment.
Lori Howell will forever be our angel. She brought calm and peace to us at a time when we had no hope or peace. She put her hand on mine when tears were streaming down my cheeks and said, "She is in the right place, don't give up hope." Her kind and reassuring words brought us peace.
Even though I was a pediatric intensive care unit nurse, all of my knowledge and training failed me when it was my own sick baby that grew inside of me. Dr. Adzick, Lori Howell and their team gave us hope. They were the first people who told us, “Don't give up, we can help your daughter.” Every nurse, nursing assistant, MRI tech, anesthesiologist, doctor, resident at CHOP — they were all so wonderful to us.
We lived in Long Island, N.Y., at the time and made the trips back and forth for appointments. Emma's mass stopped growing at 6 months into the pregnancy, so thankfully she did not need fetal surgery. After her birth, however, we realized how grave her condition was. She immediately began to develop pneumothorax (collapsed lung) after she was born. She labored to breathe. At 2 weeks old she had a muscle sparing thoracotomy at CHOP.
Emma was diagnosed with CCAM and pulmonary sequestration. The doctors were unsure if it was one or the other diagnosis in utero, but it turned out it was both. From the research I had read, back then she was one of only 17 known cases in the world with this CCAM/pulmonary sequestration combination mass.
CHOP saved my daughter’s life. They gave me hope when I had none. My Emma Grace, whom a few doctors before CHOP advised me to terminate because she would not survive, now stands six feet tall with long, wild red hair. She wears a scar on her back proudly. She is my fighter, my miracle. She was born with a quiet determination which has driven her to where she is today.
Even now, 20 years later, tears still roll down my cheeks, just like they did when Lori held my hand, when I think about how grateful I am to everyone at CHOP. They raised us up when we had no hope. With their skillful hands, they gave my Emma Grace a chance to survive, flourish and become the beautiful, beautiful soul she is today.
We thank you from the bottom of our hearts and will be forever grateful and indebted to your staff and program.
Originally published November 2016