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Parents share extraordinary story of conjoined twins separated by surgery

When the family learned they were having twins and they were conjoined, they didn’t know what to expect. They felt grateful to the doctors who helped them.

When Maggie Altobelli was 20 weeks pregnant, she went for an anatomy scan. She was excited to finally see her baby, especially because she noticed her belly was growing larger than she expected. As she glanced at the screen, she saw something surprising.

“I was like, ‘Oh my gosh, are there two of them?’ The tech took the wand off and was in a little shock and said she had to go get the doctor,” Maggie Altobelli, 33, of Chicago told TODAY Parents. The doctor came in, took a look and said she’d never seen this in her career.

“I said, ‘Oh finding out you’re having multiples?’ And she’s like, ‘No we get that. Their little stomachs are connected.’”

Maggie Altobelli got the surprise of her life at what was supposed to be a routine ultrasound
Maggie Altobelli got the surprise of her life at what was supposed to be a routine ultrasoundCourtesy Altobelli family

Stunned, Maggie Altobelli thought “OK, well, we’ll separate them.” At the time she had no idea what that meant. She soon learned.

“(Doctors) advised us at first like, ‘Hey, this is a very long road,’” she recalled. “We said, ‘Well, let’s do all the studies and make sure these girls will live a possibly healthy life.’”

Nearly a year after their birth, they were separated in a 10-hour surgery. Today, the girls are thriving at home. 

“They smile every single day,” dad Dom Altobelli, 34, told TODAY Parents. “That has really made it easier.”

Holding Addison and Lilianna could be a challenge when they were conjoined, but the first time Maggie Altobelli held one at a time, she said she felt bad, like she was choosing one over the other.
Holding Addison and Lilianna could be a challenge when they were conjoined, but the first time Maggie Altobelli held one at a time, she said she felt bad, like she was choosing one over the other.Courtesy Altobelli Family

From discovery to delivery

After her anatomy scan, Maggie and Dom Altobelli needed to process it all.

“I was trying to find out the gender of one baby I thought we were having and then it turn out to be a little more complicated,” she said. “It was an out of body experience. It’s like, ‘What do you mean their stomachs are connected? Is this even a thing?”

After delivery, the Altobelli twins had to eat, develop and become stronger for their separation surgery.
After delivery, the Altobelli twins had to eat, develop and become stronger for their separation surgery.Courtesy Altobelli Family

Soon after, she met with a maternal fetal specialist and underwent more tests to make sure the twins — who the couple nicknamed Hope and Faith — did not share a heart. If they did, separating them might not be possible. They eventually decided to work with Children’s Hospital of Philadelphia (CHOP), because doctors there have experience delivering and separating conjoined twins. Doctors learned the babies shared a diaphragm and were connected by the liver.

“They said, ‘Yes, this is a favorable situation. It’s still a very high-risk delivery and surgery,’” Maggie Altobelli said. 

The couple moved to Philadelphia for delivery and separation surgery. While having a plan comforted them, the Altobellis grappled with some unresolved feelings.

Me and Maggie were scared as hell and had no clue what was going to happen."

DAD DOM ALTOBELLI

“It was a surprise and it was very shocking,” Maggie Altobelli said. “But, we just thought that God gave us these girls for a reason.”

Still, they worried.

“It was quite a ride early on because me and Maggie were scared as hell and had no clue what was going to happen,” Dom Altobelli said. “We had to just take it one step at a time.”

Addy and Lily were always happy, smiling babies and continue to bring joy to their family now that they're home after being separated.
Addy and Lily were always happy, smiling babies and continue to bring joy to their family now that they're home after being separated.Courtesy Altobelli Family

Doctors wanted Maggie Altobelli to have the babies when she was 34 weeks pregnant. On November 18, 2020, Maggie Altobelli delivered Addison (Addy) and Lilianna (Lily) via Cesarian-section. Doctors took the girls right to the neonatal intensive care unit. Later, mom and dad held them for the first time.

“They would need two nurses to pick them up, holding them both,” Maggie Altobelli explained. “They would slowly bring them over and they would put them in your lap.”

Preparing to separate conjoined twins

Dr. Holly Hedrick’s work began when Maggie Altobelli was undergoing prenatal testing. Throughout meetings, calls and simulations, Hedrick and the team of two dozen learned their roles for the separation surgery.

“The (scans) are your first clues about whether or not babies are going to be separated,” the surgeon told TODAY Parents. “The biggest factor is really the heart and whether the heart is conjoined.”

During their stay at Children's Hospital of Philadelphia, Addy and Lily continued growing and thriving. But a cry could really turn into a medical emergency because they shared a diaphragm.
During their stay at Children's Hospital of Philadelphia, Addy and Lily continued growing and thriving. But a cry could really turn into a medical emergency because they shared a diaphragm.Ed Cunicelli / Courtesy Children's Hospital of Philadelphia

Luckily for Addy and Lily, they each had their own heart. After birth, the babies had to do what babies do — eat, sleep and develop.

“It’s about letting them feed and grow,” Hedrick explained. “Then they underwent tissue expansion, which was to help them grow some skin because they shared their chest wall from below the collarbones all the way down to their bellybuttons.”

Doctors used the babies’ newly grown skin to close their abdomens after surgery. While Lily and Addy grew, they faced complications. Sharing a chest meant that breathing could be tricky, even though the girls had tracheostomies. Lily was larger than Addy, and Lily dominated their breathing. Crying became an emergency.

“If Lily got upset … she would (control) the breathing,” Maggie Altobelli said. “There were times where Addy had coded because she couldn’t breathe because Lily would get upset.”

Addy also received extra nutrition so she could be closer in size to Lily. Finally, the girls had their 10-hour separation surgery on October 13, 2021. Separating the liver was a big challenge. The radiologists created a 3D model of the girls’ livers that showed the doctors how they were interconnected.

“That was a big liver mass,” Hedrick said. “We really had to sort out the vasculature — where one liver stops and the other one starts again.”

Separating the twins took months of planning and practice. In a 10-hour surgery, two dozen experts separated Addy and Lily's liver and diaphragm and closed their abdomens.
Separating the twins took months of planning and practice. In a 10-hour surgery, two dozen experts separated Addy and Lily's liver and diaphragm and closed their abdomens.Courtesy Children's Hospital of Philadelphia

To make it clearer, the radiologists performed contrast ultrasound during surgery to guide the separation.

“One baby’s injected and then you can see the liver light up for her and then slowly the other one,” Hedrick said. That way, doctors could see where they border should be.

Doctors also had to make sure the diaphragm still worked after it was divided.

“It’s like a piston. It goes down when we take a breath in and then when we take a breath out it comes back up,” Hedrick said.

At 2:38 p.m. Addy and Lily were separated.

“They did beautifully,” Hedrick said. “We were all really really happy.”

Learning that their daughters were separated felt incredible for the family.

“It was very surreal, just very emotional. The whole day was very peaceful and we kind of just gave it to God — and we’ve done that throughout this whole journey,” Maggie Altobelli told Savannah Guthrie and Hoda Kotb in an exclusive interview. “We’re just so lucky to have surgeons who know what they’re doing and really worked hard and cared for our girls like they were their own.”

Life at home

On December 1, 2021, the family flew home to Chicago. The girls still have a breathing tube and require a vent, though Hedrick feels hopeful they’ll be able to breathe on their own. Lily and Addy are now exploring lives by themselves. At first they were unsure of being separated — and they still like to be close.

“They sit up and look at each other and smile and play,” Dom Altobelli said. “Anytime they’re close they’re reaching for each other’s hands and faces and breathing tubes.”

Even having the girls in high chairs while the family eats dinner feels like a miracle to the Altobelli family.
Even having the girls in high chairs while the family eats dinner feels like a miracle to the Altobelli family.Courtesy Children's Hospital of Philadelphia

The girls are doing physical, occupation and speech therapy. They also have feeding tubes but are practicing eating. They’re enjoying life like any other toddlers, which feels amazing to Maggie and Dom Altobelli.

“This is our journey. It’s a very special one in many ways,” Maggie Altobelli said. “These girls are going to live long, healthy lives. It’s pretty miraculous and unbelievable that we’re living this life.”

The couple shared their story because they feel grateful to Hedrick and hope to raise money to support her research.

Addy and Lily have loads of therapy to gain strength and function after their surgery. But no matter how tough their days are, they always smile.
Addy and Lily have loads of therapy to gain strength and function after their surgery. But no matter how tough their days are, they always smile.Courtesy Children's Hospital of Philadelphia

“Dr. Holly Hedrick is our Wonder Woman and we want her to be funded to help a whole lot more people,” Dom Altobelli said.