First 5 Months Of Life In Hospital, Atlantic Highlands Baby Now Home

ATLANTIC HIGHLANDS, NJ — This baby girl from Atlantic Highlands weighed only two pounds, three ounces when she was born. She needed open-heart surgery at five weeks old (without which she would have died), and she spent the first five months of her life at Children’s Hospital of Philadelphia (CHOP).

But this December, Sully Mager, now 7 months old, is about to celebrate her first Christmas. She is out of the hospital and home celebrating with her parents and older siblings, a brother, 9, and sister, 7.

"I think probably 10 or even five years ago, there's a strong possibility a baby like Sully would not be here right now," said her mother, Colleen. "The fact that she is alive today is a testament to the medical care at Children's Hospital of Philadelphia. They made the right decision at every turn for her. It was incredibly scary to live through that, but that's what they do every day."

"This whole thing taught me that old saying: You never know how strong you are until you have to be strong."

Sully was born on April 17 of this year to husband and wife Evan and Colleen Mager (her maiden name is Weimer). Colleen grew up in Atlantic Highlands and also lived in Leonardo for 10 years; her husband is from New York state. Last year, the couple decided to move back to Atlantic Highlands and raise their family in the bucolic hillside town by the sea.

Evan and Colleen's first baby, their son 9-year-old Reid, was born a little bit early. Then, while pregnant with their daughter, Quinn, Colleen was diagnosed with preeclampsia, a life-threatening condition where babies are usually delivered pre-term. Quinn was born at 28 weeks and spent the first 60 days of her life at Monmouth Medical Center in Long Branch.

"After having such a traumatic experience with Quinn, we were apprehensive about having a third baby," said Colleen. "But doctors assured us one more would be fine. Sully was meant to be our last."

The bad news struck at the 22-week scan: The couple learned that Sully, growing inside, had a heart condition called transposition of the great arteries. It is a rare birth defect that only affects about 1,100 babies born in the United States every year.

Then, at 28 weeks pregnant, more bad news: Colleen was again diagnosed with preeclampsia. The only remedy was for Colleen again to give birth early, at 30 weeks. In a further complication, Sully also had a condition called IUGR, meaning her growth was restricted in utero.

"Our first daughter Quinn was actually smaller when she was born, one pound, 12 ounces. Sully was two pounds, three ounces," said their mother. "But still, even for a preemie she was small, in the first percentile. You could probably hold her in one hand. And Quinn did not have the heart condition Sully had."

After she was born, Sully remained in the CHOP NICU. Colleen did not leave her newborn baby's side, and rarely returned home to Atlantic Highlands.

However, CHOP doctors told the parents Sully's heart defect was going to be fatal if it was not treated — and very soon. Time was not on their side: They had to operate within weeks, not months.

"Unfortunately, the heart condition Sully has is not compatible with life in the long term," said Colleen. "You can't get oxygen to your body. Most babies receive their arterial switch operation within their first week of life."

CHOP heart surgeons have performed this surgery hundreds, if not thousands of times, even on newborn babies that weigh six, seven pounds and up.

But with Sully, they had a preemie who weighed not even three pounds.

"They wanted to operate, but the concern with her was she was so small," said Colleen. "They could not do that surgery on a two-pound baby. Doctors really wanted to get her closer to five and a half pounds. But when she was five weeks old, they came to us. They told us now was the time to do the surgery. They needed to cut through the two main arteries, switch them and stitch them back together. They also needed to move the two coronary arteries."

Colleen and Evan handed their newborn off for the eight-hour surgery.

"It was a scary experience to hand your baby off to doctors kind of knowing there was a chance you may never see her again," said Colleen. "They called us every hour and let us know how the surgery was progressing."

However, after the open-heart surgery, done by CHOP pediatric cardiac surgeon Dr. Katsuhide “Kats” Maeda, Sully started to thrive.

She made improvements every single day, said the CHOP team: Very quickly, she no longer needed help with breathing. She began to gain weight; she started moving up on her feeds, and was able to come off all of her sedation and pain medications.

Sully still remained in the CHOP NICU for several months, 158 days total. She was released back home to her parents in September.

The Monmouth County family is looking forward to a happy, healthy holiday season together.

Sully is not entirely out of the woods, said her mom: She currently has stenosis or narrowing in her left pulmonary artery that will need to be fixed.

"We are hopeful they will be able to do this with a catheterization. Once that is fixed, she will be monitored yearly for any other issues that might arise. But for the most part, though, she will be able to participate in sports and other activities like anyone else."

Colleen has also documented their journey from the beginning on her Instagram page, From Minnie to Moose.