83°Good afternoon
Lia, 3, and her mother, Amy Galm, have a laugh...

Lia, 3, and her mother, Amy Galm, have a laugh outside their home in Massapequa.  Credit: Linda Rosier

Amy Galm is trying to talk, but her 3-year-old adopted daughter, Lia, has climbed onto her lap and stuck a toy dentist’s mirror in Galm’s mouth, pretending to inspect her mother’s teeth. In their Massapequa den, the big-screen TV is tuned to “Teletubbies,” Zoey the white Pomeranian is scampering about, and Lia’s toys are strewed across the floor.

Some friends and family members of Galm’s joke that what Lia’s doing is exactly what Galm needs: to have her head examined.

And truth be told, Galm sometimes thinks they are right. In her late 40s, with four children already, the youngest in his teens, and having just become a grandmother, Galm accidentally became a mother again. This time to a Chinese toddler who needed corrective surgery on her skull.

Galm was just supposed to deliver Lia from her orphanage in China to New York for medical treatment in late 2016; a family in South Carolina was to come to Manhattan to foster Lia and then adopt her.

“My husband was like, ‘She is not living here. No baby in this house. No toys on the floor, no food on the couch,’ ” Galm said. That was fine with Galm. “I was done,” Galm said of having children. “We were done.”

But while man plans, the proverb goes, God laughs. One thing after another went wrong — until the situation grew into something the Galms now said is very right.

Galm’s husband, Tom, said his co-workers in the Bronx trucking company where he is a transportation manager initially had this reaction to the adoption: “What are you, crazy?” But then he told them Lia’s tale.

Lia with her family: brothers Jack, left, and Max, and...

Lia with her family: brothers Jack, left, and Max, and parents Amy and Tom. The Galms also have two older children.  Credit: Linda Rosier

“In the end, the human aspect to the story captures the people,” he said. “You can’t help but say, ‘That’s fantastic.’ ”

SOMETHING STRANGE

Lia wasn’t the typical “oops” baby. In the summer of 2016, Lia — then called Liling — was 18 months old and living in an orphanage in Pingliang city, China, in the remote Gansu province. And there was something very strange about her — the bones on the sides of her skull had prematurely fused, meaning her brain had nowhere to grow but up. Her head was flattened from front to back, and the top was beginning to widen like a mushroom cap.

Lia had been put on a list of hard-to-place children. Janet Kamenick of Charlotte, North Carolina, who had adopted from a Chinese orphanage, works to get homes for such babies. When she saw Lia’s photo, she suspected a rare condition called craniosynostosis because her daughter had also had it. Kamenick shared Lia’s photo with a craniosynostosis Facebook group. “I might have tagged Amy, knowing that she was somewhat of an expert in craniosynostosis,” Kamenick said.

More than 15 years earlier, Amy Galm had become involved with a nationwide group called Craniosynostosis and Positional Plagiocephaly Support, because the Galms’ third child, Max, now 18 and starting at Adelphi University this fall, needed surgery to correct craniosynostosis when he was 14 months old.

Lia, 3, playing with her brother Max, 18, at their home...

Lia, 3, playing with her brother Max, 18, at their home in Massapequa.  Credit: Linda Rosier

Amy Galm eventually took over the group’s website, making it a for-profit enterprise connecting children’s hospitals and their craniofacial teams with affected families. “I love it,” Galm said of advocating for families. “I can understand their anxiety, but I can also alleviate their fears.”

When the condition was diagnosed in Jennifer Rodriguez’s son Matthew, for instance, Galm helped her. “I was pretty much a hot mess,” said Rodriguez, of West Hempstead. “We were able to see three big doctors in less than 72 hours just from her being able to help me set up appointments.”

In Lia’s case, Galm signed on to help facilitate a medical visa, working with the nonprofit Grace Children’s Foundation’s Children’s Resource Exchange Center in Manhattan, to bring the baby to Manhattan for treatment. The family from South Carolina was to temporarily move to New York and take over.

But the Chinese government had other ideas.

PLAYING CATCH UP

Galm was scheduled to leave for China on Oct. 1, 2016. On Sept. 29 — two days before her plane was to lift off — her contact in China called to say the government-run orphanage would let Lia come to the United States for treatment only if Galm agreed to house her until adoption by the South Carolina family was finalized, a process that could take months.

Lia, 3, plays in the den of her home in...

Lia, 3, plays in the den of her home in Massapequa, with parents Tom and Amy Galm in the background. Credit: Linda Rosier

“That was one of the worst days,” Galm said. “Then I had to make the decision. What am I going to do? Do I just abandon the mission and leave her in China?” Tom gave in and agreed the Galms could keep Lia — only until the planned adoption.

So while the South Carolina family was being processed, Lia’s medical journey began. A physician Galm has worked with for 20 years — Dr. David A. Staffenberg, chief of pediatric plastic surgery at Hassenfeld Children’s Hospital at NYU Langone in Manhattan — would quarterback Lia’s care. It immediately became clear that Lia had Saethre-Chotzen Syndrome, a more complex form of craniosynostosis that occurs in about 1 in 25,000 to 50,000 births.

“The skull is not simply one big round piece of bone,” Staffenberg said. “It’s composed of separate bones connected to each other by fibrous connections.” That’s what helps the skull get through the birth canal and why some newborns initially look like they have pointy heads.

After birth, the fibrous connections — called sutures — allow the skull to expand as the brain grows, with new bone growing in place of the sutures. “If the bones stick together prematurely, it limits the growth of the brain in that area. If it’s not able to grow in one direction, it will find a way to grow in another direction,” he said.

Most babies with craniosynostosis have just one prematurely closed suture and have surgery to correct the problem much earlier than Lia could; they may not get to where their heads are severely misshapen, Staffenberg said.

Lia joins a sculpture on Shamian Island, Guangzhou, China, that...

Lia joins a sculpture on Shamian Island, Guangzhou, China, that adoptive familes often photograph.  Credit: Galm Family

But Lia had two areas closed, on the left and right sides of her forehead. Lia’s fontanel, the soft spot on the top of the head that typically gets smaller and closes as a baby grows, had widened as her brain struggled to find more room.

“In many complex cases — and Lia’s is one — the craniosynostosis is more involved and the patients may be facing many surgeries throughout their growth. If the brain is not able to get enough room, the ears can be affected, vision can be affected, breathing can be affected,” Staffenberg said.

In Lia’s case, the doctors were playing catch-up.

MASSAPEQUA CHEERS

Lia’s first surgery, in January 2017, involved cutting the bone of her skull and attaching devices Staffenberg likens to jack stands with stems that stick out through the skin. The Galms had to turn the four stems twice a day for two weeks to gradually push the back of Lia’s skull outward, making more room for her brain. “As the skull is moved back, the brain actually moves into that new space,” Staffenberg said. Afterward, the devices would be surgically removed.

“It was such hell,” Galm said of what Lia endured when the stems were turned and with the complications and subsequent surgeries — she’s had five surgeries so far. Lia’s scar runs across her head like the switchback pattern of a hiking trail. Some of her scars are continuing to heal.

Lia Galm, who has Saethre-Chotzen Syndrome, a form of craniosynostosis,...

Lia Galm, who has Saethre-Chotzen Syndrome, a form of craniosynostosis, before her first surgery, left and middle,  and after, with devices her parents had to turn regularly to expand the skull. Credit: Galm Family

But even the before the first surgery, the Galms got more bad news about Lia’s adoption. Complications had occurred with the South Carolina family, meaning it would no longer be adopting Lia.

“There was no way we were sending her back to an orphanage in China,” Tom Galm said. “To me it was not a tough choice at that point. It was naturally and instinctively the right thing to do,” he said of adopting Lia. Besides, they’d fallen in love with the lively and impish toddler.

Amy Galm confessed that, for her, that love began just a few days after she picked up Lia in China. “She needed me so much,” Galm said. “She never let me put her down, and she slept on my chest in my bed. I used to cry, wondering, what did I get myself into and how would I ever say goodbye. She just loved me so much. How could I not love her back?”

Galm scaled back working at the Massapequa clothing store she owns, Denim Rehab Boutique. The Galms flew back to China with Lia in December 2017. “She had to be on her soil to be adopted,” Tom said.

Since Lia’s initial arrival on Long Island, Amy has been posting photos and stories on the Massapequa Moms Facebook page, engaging the community in embracing Lia and often asking for their thoughts and prayers. In addition to posting photos of Lia with her head wrapped in gauze after surgeries, she often posts photos of a happy and spirited Lia playing dress up.

Dr. David A. Staffenberg, chief of pediatric plastic surgery at...

Dr. David A. Staffenberg, chief of pediatric plastic surgery at Hassenfeld Children's Hospital at NYU Langone in Manhattan, with Lia.  Credit: Galm Family/Amy Galm

Last month, on July Fourth, Amy posted about Lia’s first Independence Day as a U.S. citizen.

“The things she writes about, looking through the eyes of her daughter . . . I think it’s amazing,” said Mary Upton of Massapequa Park, a member of the Massapequa moms group. “We are all pulling for her.”

Upton donated the proceeds from her family’s 12th annual Todd Upton Memorial Golf Tournament in July to Galm to help with Lia’s expenses, which have topped $100,000, Galm said.The family’s GoFundMe campaign raised nearly $20,000 for adoption-related expenses.

And when Amy posted about returning to China to adopt Lia, Massapequa cheered.

When the Galms returned from the airport on the evening of Dec. 3, 2017, scores of neighbors and friends — even strangers — were waiting outside their home to welcome them.

Tom Galm cradles Lia shortly after her third skull surgery...

Tom Galm cradles Lia shortly after her third skull surgery in January. Credit: Galm Family

“It was insane,” Amy Galm said. “Everybody got invested in the whole story. Everyone wanted me to keep her — people I don’t even know.”

Lia will begin preschool in September at Alternatives for Children in Dix Hills, a school that can help Lia with her special needs. She’s still got a ways to go, learning English as her second language, getting hearing aids and continuing to be monitored physically.

Lia’s next oldest brother, Jack, 15, soon begins his sophomore year at Farmingdale High School, a reminder of the empty nest that might have been just around the corner for his parents.

Tom Galm, 48, sighed at that thought. “We were close. We were definitely close.” He said if anything is challenging about adding Lia to the family, it’s his and Amy’s ages. “We’re tired,” he said, joking that “if it happens again, Amy’s doing it on her own.”

As for Lia’s new brothers, both insist they knew all along that Lia would become a part of their family. “She’s just a bundle of joy. She fit in,” Max said.

Echoed Jack: “I knew that my mom wasn’t going to let her go. Because that’s how my mom is.”

Video Player is loading.
Current Time 0:00
Duration 0:00
Loaded: 0%
Stream Type LIVE
Remaining Time 0:00
 
1x
    • Chapters
    • descriptions off, selected
    • captions off, selected
      Get the latest news and more great videos at NewsdayTV Credit: Newsday

      New police training village ... Fitness for inmates battling addiction ... Camping at the beach ... All the buzz over bees ... Get the latest news and more great videos at NewsdayTV

      Video Player is loading.
      Current Time 0:00
      Duration 0:00
      Loaded: 0%
      Stream Type LIVE
      Remaining Time 0:00
       
      1x
        • Chapters
        • descriptions off, selected
        • captions off, selected
          Get the latest news and more great videos at NewsdayTV Credit: Newsday

          New police training village ... Fitness for inmates battling addiction ... Camping at the beach ... All the buzz over bees ... Get the latest news and more great videos at NewsdayTV

          SUBSCRIBE

          Unlimited Digital AccessOnly 25¢for 6 months

          ACT NOWSALE ENDS SOON | CANCEL ANYTIME