After five-month hospital stay, Atlantic Highlands miracle baby home for first Christmas
The first round of bad news came just past the halfway point of Colleen Mager’s pregnancy: Her baby had a heart defect. The aorta and main pulmonary artery were switched in position, a condition that causes life-threatening problems with blood flow.
About 1 in every 1,100 babies in the U.S. have this issue, known as TGA (transposition of the great arteries), and there is a surgery for it.
Then came the second round of bad news for the lifelong Atlantic Highlands resident.
At 28 weeks, Colleen was diagnosed with preeclampsia, a high-blood pressure disorder during pregnancy that puts the mother in grave danger. The only remedy for it is to give birth, which for Colleen meant being induced — and birthing a preemie too small to undergo the TGA surgery.
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So at 30 weeks, out came baby Sully, a 2-pound, 3-ounce girl — and everyone held their breath. Sully was going to have to hang on until she grew a bit bigger.
“Doctors (at Children’s Hospital of Philadelphia) said to us they’d only experienced a handful of times that a baby was born that small with that kind of heart condition,” Colleen said. “When you’re at one of the top children’s hospitals in the world, that’s not what you want to hear.”
Five months later, Sully came home. Suffice it to say this miracle baby’s first Christmas will be extra special.
'There was so much unknown'
Colleen Mager (née Weimer) and her husband Evan Mager were no strangers to the preemie thing. Their son Reid had been born a bit early, and then their first daughter Quinn arrived at just 28 weeks and weighing 1 pound, 12 ounces. Now they’re 9 and 7 years old, respectively, and Colleen and Evan wanted to add one more member to the family.
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When that effort took a turn into uncharted territory, Evan admired Colleen’s calmness.
“There was so much unknown,” he said. “Being the husband and not having much control, you go off of your wife’s emotions. If she’s freaking out, you’re going to freak out. Seeing her being mentally strong, that was probably the best thing for me.”
Sully was born on April 14 — Colleen’s 38th birthday. Then came an agonizing five-week wait as Sully grew. Once she reached 3½ pounds, doctors green-lighted the surgery. As Dr. Katsuhide “Kats” Maeda — cardiac surgeon in the Cardiac Center at Children’s Hospital of Philadelphia — pointed out in a phone interview with the Asbury Park Press, even then Sully was barely above the absolute minimum threshold for the procedure. The surgery had been performed on babies under 2 kilograms (or 4.4 pounds) just 19 times ever at CHOP.
“I don’t know if there’s another place in this country that Sully would still be here,” Colleen said. “It’s hard when they tell you they’re going to bring our three-and-a-half-pound baby in for open-heart surgery, but looking back, every decision they made was the right one for her. We owe Sully’s life to them.”
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'You can call it a miracle'
As every preemie parent knows, the hard part really begins after childbirth. It can be a traumatic mental-health experience, and it helps to speak with someone who's walked the walk. Colleen has chronicled Sully’s journey on a social media through an Instagram page titled “From Mini to Moose.” It has 26,000 followers.
“I had a parent reach out to me who had twin preemies, and one of them needed surgery like Sully,” Colleen said. “She said before her babies were born people didn’t give her a lot of hope, but then she saw Sully’s story and it helped encourage her. That made me feel good.”
Sully still has some pulmonary complications that will require intervention eventually, but “she’s been thriving,” Colleen said. “She came home on a feeding tube and now she mostly feeds by mouth.”
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Maeda, the surgeon, said his department is thrilled about Sully’s progress.
“We are so glad she’s doing well,” he said. “You can call it a miracle.”
With Christmas approaching — Santa will be bringing some sensory toys and a baby doll — that miracle is not lost on Sully’s parents.
“Every holiday is special when you have a baby like this,” Colleen said. “You think to yourself, ‘I didn’t know if I’d ever get to experience this with you.’ And now I’m getting to do it.”
Jerry Carino is community columnist for the Asbury Park Press, focusing on the Jersey Shore’s interesting people, inspiring stories and pressing issues. Contact him at jcarino@gannettnj.com.
This article originally appeared on Asbury Park Press: Atlantic Highlands miracle baby home after five-month hospital stay
