The Kelly family: Mary, Addison, Christopher and JedIn November 2006, when Mary Kelly was 26 weeks pregnant with her daughter Addison, a routine ultrasound alerted her obstetrician that something wasn’t right. She was sent to a perinatologist who said that Addison was very sick; she had a large mass in her chest that was causing fetal hydrops, a dangerous accumulation of fluid that could be life-threatening.
The mass had flattened Addison’s heart, causing fluid to back up in the blood vessels. This fluid leaked everywhere in her body, causing her to be twice the size she should have been.
“The doctor told us, ‘If there is anything that can be done for this baby, it is at CHOP. You need to get there immediately,’” recalls Mary.
Mary and her husband Jed traveled from their home 90 minutes away in northern New Jersey to The Children’s Hospital of Philadelphia, where Mary was evaluated by a multidisciplinary team of specialists in the Center for Fetal Diagnosis and Treatment. After a thorough evaluation, including an ultrafast fetal MRI and level IV ultrasound, the team met with the Kellys to explain the condition and discuss the options for treatment, which were few.
The team explained that Addison had a large mediastinal teratoma, a tumor in the middle of her chest between her heart and lungs that was causing her to go into heart failure. The Kellys could terminate the pregnancy; they could do nothing, which could compromise both Mary’s and the baby’s health; or they could undergo fetal surgery to remove the tumor, giving Addison a 50-50 chance of survival.
They opted for fetal surgery. Two days later, a large multidisciplinary team led by Surgeon-in-Chief and Director of the Center, N. Scott Adzick, MD, MMM, successfully removed Addison’s tumor while she was still in the womb. Mary and her daughter were the second documented mother and child at CHOP (and in the world) to undergo fetal surgery for this type of condition.
The surgery went well, and the plan was to allow Addison to develop for 10 more weeks before delivery. After being discharged, Mary stayed on bed rest close by in Philadelphia. But less than two days later, she went into premature labor.
On Nov. 16, 2006, Addison Hope Kelly was born at 27 weeks gestation — nearly three months premature. Addison spent the first nine months of her life in CHOP’s Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU), where she underwent additional surgeries and battled to recover.
Addison with her brother ChristopherDuring that time, the Kellys were in and out of hotels, making regular trips from their home and relying on extended family to look after their 19-month-old son Christopher so they could be by Addison’s side every day.
Addison went home for the first time on Oct. 23, 2007. Even being ventilator-dependent at first would not slow her down.
Today, Addison is a happy, social and playful 7-year-old. Her favorite activities include swimming, playing softball, ice skating, yoga and riding her bike.
“Addison is a beautiful girl with so much spirit and determination, and clearly a strong will to live!” says Mary. “She would not be here if we had not gotten to CHOP.”
While the experience put an enormous strain on the Kelly family, they were fortunate to have the support and resources to do what they needed for their daughter. But they know many other families in their position do not.
To help those families, they created the Addison’s Hope for Fetal Families Fund. The fund helps families access the world-class services of the Center by paying for things insurance will not, such as travel costs, lodging, meals and other expenses related to getting to and staying in Philadelphia during evaluation, treatment and recovery.
“This fund supports the families so they can support their children, because that’s a big part of what helps these babies recover,” says Mary.