NEPTUNE CITY, N.J. (AP) — Amanda Maggio knew something was wrong when she reported for work one day in mid-November.
Her vision was blurred.
It had been a rough pregnancy for the 33-year-old Neptune City resident, with constant nausea, but this was different. She ended up hospitalized, her blood pressure spiked and her liver started failing. The diagnosis: HELLP syndrome, a life-threatening complication developed by nearly 50,000 expectant moms each year in the U.S.
The only cure is having the baby.
The problem for Maggio: She was just 27 weeks pregnant.
Doctors at Monmouth Medical Center in Long Branch performed a C-section and out came Demi James Maggio, a 2-pound, 1-ounce girl born three months early. She was whisked away for emergency medical treatment as Amanda went into heart failure.
"I've never felt so helpless in my life," her husband Frank Maggio said. "I remember sinking into a corner as all these doctors surrounded both of them. Do I go with my new baby who is fighting for her life, or stay with my wife who is fighting for her life? I was basically in shock."
That was the start of a three-month roller coaster, one that included the month-long federal government shutdown (Frank is a U.S. Coast Guard officer) and the kindnesses of innumerable people.
Suffice it to say this Mother's Day carries an extra special meaning in the Maggio household.
'So Many Tubes and Wires'
As preemie parents know, it's jarring to see your newborn come out purple and doll-sized. Amanda, who spent a week in intensive care, didn't lay eyes on Demi until three days after the birth, a tear-filled moment of joy and awe.
"She had so many tubes and wires, I couldn't really see what she looked like," Amanda said (Demi had been intubated immediately to facilitate breathing). "This is a part of life we weren't meant to see. It was kind of wild to see her at a point where she was meant to still be in my belly."
Demi endured multiple blood transfusions and battled cardiac and eyesight issues at first, but it could have been much worse. Fewer than 1 percent of babies are born before 28 weeks, and although survival rates are high thanks to the incredible work of neonatal intensive care units, serious complications are common.
"For as early as she came, she did very well," Amanda Maggio said.
The hard part came a few days later, when mom got discharged and baby didn't.
"There's something you feel on a primal level — it's painful when you are separated from your baby at birth, especially leaving the hospital without your child," she said.
For three months, the Maggios visited Demi in the NICU. It was not an easy time. Amanda's recovery was difficult as she took leave from her job as an East Brunswick police officer. And Frank, a machinery technician second class based in Sandy Hook, missed two paychecks as the government shut down.
"We had a child in the NICU, which is an incredible stress, and on top of that we had no income coming into our home," Amanda said.
Family, friends and strangers stepped up to help.
Help from a Charity
From the start, the Maggios had great support. Amanda's sister Jessica Arnold, a nurse practitioner who lives in California, flew in despite her own pregnancy to lend a hand. And Michael's Feat, a Monmouth County nonprofit that helps seriously ill newborns and their families, showered them with aid.
"Gas cards, gift cards, food, onesies, books, blankets — it was all so helpful," Frank Maggio said.
Frank was so focused on caring for his wife and visiting his child, he hardly noticed the shutdown (Coast Guard employees continued to work on a modified schedule; they received back pay after the government reopened).
"The shutdown consumed everybody I worked with," he said. "I didn't even have the mental energy to worry about it. Every ounce was devoted to these two."
Still, there were bills to pay. Michael's Feat chipped in there as well.
"When you get a check in the mail, it brings tears to your eyes," Frank said.
The nonprofit's most memorable assist came on Christmas day when it sent a special visitor to Monmouth Medical Center.
"Santa Claus coming for Demi in the NICU, that's something you're never going to forget," Frank said.
Last month the Maggios were honored at Michael Feat's annual gala, which raised $135,000 for the cause.
"The moment I met the Maggio family I knew they were special, and it is such a privilege to be able to honor them at our gala after all that they have been through this year," said Dana Puharic, the charity's founder.
Demi came home in mid-February, after 88 days. She weighs 11 pounds now at six months of age. She is progressing nicely and eventually, she'll catch up to her peers.
The Maggios have some hard-earned advice for fellow preemie parents.
"Ask for help when you need it," Frank said. "There are so many people who are willing to help. You can't do this alone."
Added Amanda, "There are times when it's hard to look to the future, but have faith that it will get better."
They'll be joined by their own moms on Sunday — three generations celebrating motherhood.
"I have whole new appreciation for it," Amanda said.