Raising money for Maisy

• Schultz family

Julie Buntjer/Daily Globe Mike (right) and Molly Schultz pose in their home with daughter Maisy and son Gavin. A benefit fundraiser for Maisy will be from 11 a.m. to 1:30 p.m. Sunday at St. Matthew Lutheran Church, Worthington.

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• Schultz family interview

WORTHINGTON — At nine months of age, Maisy Schultz loves to play with bright colored toys. She often has a pink pacifier in her mouth and a spare in her hand, and she is the spitting image of her blonde-haired, blue-eyed parents, Mike and Molly.

To look at Maisy, one wouldn’t know the battles she has overcome just to be able to sit up, roll over or do any of the things a healthy baby can do. Yet, underneath her layer of clothing is the faint scar left behind from an open heart surgery she underwent last September, and a port that holds her feeding tube for up to seven hours of every day.

Maisy Schultz was born July 30 in Sioux Falls, S.D., three months after her parents learned their new bundle of joy had a heart defect. The problem was discovered during Molly’s 20-week checkup, but the family wasn’t told until she returned for a follow-up appointment early last May.

The Schultzes, during what was the worst news they had ever heard, learned their little girl had Tetralogy of Fallot with Pulmonary Atresia (TOF-PA). What it meant was Maisy had a hole between the ventricles in her heart. In addition, the pulmonary artery that travels between the heart and the lung was too small.

The condition is often related to a chromosomal deletion syndrome, DiGeorge Syndrome, which affects roughly one in 4,000 births, said Mike. In addition, tests revealed Maisy only had one kidney.

Early arrival

Despite Maisy’s heart condition, Molly had a normal pregnancy. There were extra doctor appointments to follow the progress of Maisy’s weight gain that were crucial in preparing for the baby’s arrival.

Maisy was born five weeks premature, weighing five pounds and measuring 17 inches in length. She surprised her parents and even her doctors, who had anticipated her birth weight to be about four pounds.

Though Molly was allowed to briefly hold her little girl, medical staff quickly whisked the baby to the neonatal intensive care unit (NICU) to tend to her health issues, including something they hadn’t suspected — Acutes Aplaysia, which is an area of missing skin at the top of her head.

“Mike saw a lot of stuff on the Internet that Acutes Aplaysia was associated with some things that were a lot more severe … so we were really worried that she had something even worse,” described Molly. “When she only had DiGeorge Syndrome, it made it seem like it wasn’t so bad.”

“We were worried so much before about having DiGeorge … and then we were thanking God that she only had DiGeorge Syndrome,” added Mike.

A battery of tests was run over the course of Maisy’s next three weeks in the hospital. She was allowed to finally go home on Aug. 23, her original due date. A month later, the Schultzes were on their way to Ann Arbor, Mich., for Maisy’s first open heart surgery.

The operation included the insertion of a conduit tube to increase the size of Maisy’s pulmonary artery, said Molly. As she grows, Maisy will need additional surgeries to expand the size of the tube.

Preparing for surgery

Maisy spent nearly three weeks in the C.S. Mott Children’s Hospital at Ann Arbor after the September surgery.

“We’ve been home since early October,” said Molly.

Shortly after they returned to rural Worthington, Maisy began rejecting her bottle. It was one of the concerns her parents had been warned about — babies with heart conditions often find it a struggle to eat and drink, and yet continue to breathe.

“She was just so tired because of her heart,” said Molly.

The family took Maisy back to Sioux Falls, where doctors put in an NG-tube that went into her nose and down to her stomach. For the next three months, that was how she received her nourishment. Then, they returned to Sioux Falls for doctors to insert a G-tube directly into Maisy’s stomach.

“She gets offered a bottle every time just so she doesn’t get into that oral aversion to things in her mouth,” Molly said. “She won’t take more than half an ounce, usually.”

The rest of her food is given through a feeding pump, with milk given seven times per day. Each feeding takes one hour, and as of late, Maisy has struggled to keep the food down. As of her last doctor visit, she weighed 13 pounds, five ounces — about the size of a healthy three-month-old baby.

“She’s in constant heart failure until she gets her next heart problem fixed,” explained Molly. “It’s really important she not get sick because of her low immune system. We don’t really take her anywhere … except maybe a doctor appointment about once a week. We have a home nurse that comes to check her oxygen level and her weight once a week.”

The hope is that Maisy will be up to 15 pounds by the time she returns to Ann Arbor at the end of May for her second open heart surgery.

This one, said Molly, will be the hardest surgery Maisy will likely have to endure. It will include fixing the hole in her heart, attaching a couple of collateral veins and replacing the conduit tube that was installed last September.

“Of all the surgeries she will have in her life, this is her big one — the longest recovery time expected,” said Molly. “All of the surgeries after this should just be replacing the conduit.”

Maisy’s oxygen should go up and she should be healthier following the surgery, but the recovery time could be up to a month or longer. During that time, Mike and Molly hope to be able to stay at the Ronald McDonald House in Ann Arbor.

Fundraiser planned

A fundraising benefit for Maisy is planned from 11 a.m. to 1:30 p.m. Sunday at St. Matthew Lutheran Church, 1505 Dover St., in Worthington. The event will include a pork sandwich dinner and a live auction, which will begin at 12:30 p.m.

Among the items for the auction are Minnesota Twins tickets, lawn chairs, gift baskets, gift certificates and numerous other items.

While the Schultzes are in Ann Arbor, their 10-year-old son Gavin — a fourth-grader at Prairie Elementary — will stay with family.

Molly’s mother and registered nurse, Pat VanWaus of Worthington, has cared for Maisy each morning Monday through Friday, allowing Molly to work part-time at Bedford Industries in Worthington. Mike also works at Bedford.

Both said they appreciate the help of their employer, as well as their family and friends, as they address Maisy’s health issues. Most of all, they appreciate being able to be with their daughter when she needs them.

“We feel just as blessed as anyone else, and maybe even more blessed sometimes,” said Molly. “We’re just really happy to have her and we treasure her every day. I don’t think we every take her for granted. We celebrate every month birthday with cake.

“Every kid is made for a special reason, and we know that she is, too,” she added. “What a blessing she is to everyone that knows her. She can teach us a lot.”

On the Net:

www.caringbridge.org/visit/schultz

www.vcfs.org

Tags: news, worthington, benefit, maisy, schultz