‘Miracle Baby’ Survives After Being Born with His Insides on the Outside of His Body (Exclusive)

After a year of fertility treatments, Samatha and Dylan Grant decided to take a break and were thrilled to “accidentally” get pregnant with their first child in May 2022. At a 14-week ultrasound, doctors saw an indicator of a genetic trisomy. They also noted the baby had a birth defect called an omphalocele, where the abdominal contents protrude into a thin-walled sac outside of the abdominal cavity, according to the NIH.

The couple was told the omphalocele was relatively easy to repair through surgery right after birth, and that their son could have a completely normal life. They did genetic testing, too, to see if he had a trisomy.

“I had seen quite a bit,” Samatha, who at the time worked as a medic at Texas Children’s Hospital on the Kangaroo Crew, says. “So I was just kind of like, ‘Wow, I don’t know what to do with this, because I definitely don’t want my child suffering.'”

Fortunately, the genetic testing came back clean. “He was perfect genetically,” Samatha says.

At the 20-week ultrasound, the tech wondered why they couldn’t see the baby’s bladder. But he was a small baby due to the birth defect. “So they were like, ‘We’ll continue to monitor it, maybe he’s just too small to actually see it.”

Two months later, the couple from Pasadena, Texas, was told their son had OEIS Syndrome, a very rare genetic malformation which includes omphalocele, cloacal extrosphy, imperforated anus and spinal defects.

“It’s very, very rare,” says his pediatric urologist at Texas Children’s, Dr. Niccolò Passoni. It affects about one in 400,000 live births.

“The diagnosis is pretty detrimental for life,” Samatha says. Often, the malformations are so severe that babies don’t make it to birth.

But in case the baby did survive the pregnancy, doctors advised the couple to make a birth plan. They were told the baby’s best chance of survival was for Samatha to have a C-section. But his birth defects were so severe and his omphalocele looked so large, “he probably won’t live after birth anyway,” Samatha Grant remembers being told.

“If there’s almost no chance of survival, then why even go down that road?” she remembers asking. “They were like, ‘Well, it’s the best chance for him.” And I was like, “Okay, but me being strapped down to a table, cut open while my baby is passing away — that’s not something I want to experience.'”

She wanted to have a vaginal birth so she would be able to sit up and hold her son and say goodbye.

Every doctor’s visit was more upsetting than the last, says Samatha’s mother-in-law, Marion Grant.

“Every time they would go to the doctor’s appointment, they would be so upset when they would leave, because they just got nothing but bad news,” says Marion. “They felt discouraged every single time.”

They were so devastated about their baby’s condition that they didn’t even tell their friends. They told family he was “very, very sick.”

“We decided to keep it to ourselves that he’s most likely going to die — that there were more chances that he’s going to die, than he is going to live,” Samatha says.

“We had so many mixed emotions,” remembers Dylan, 30, a firefighter with the Houston Fire Department. “We didn’t know if we were going to have a baby or not.”

The couple ordered a name plate that said, “Blakely.” If the baby died, they planned to name him after Samatha’s late father so they could find each other in heaven.

“If he passes away, then at least he can go meet his Grandpa, and they could have the same name,” she remembers thinking.

In mid-December, Samatha went to the ER because she was leaking fluid. She was told that the baby was sitting on her bladder and to just wear a panty liner. Over the next week, the leakage got so bad she had to switch to adult diapers.

Nine days after her ER visit, she woke with contractions. She thought they must be Braxton Hicks because she was still six weeks from her January 28 due date.

She ignored the contractions until they were five minutes apart. “The pain was excruciating,” she says.

At Texas Children’s Pavilion for Women doctors discovered that what she had been told was just bladder incontinence was actually amniotic fluid. There was none left.

Her son was born weighing 4 pounds 10 ounces on December 23, 2023.

“He was born very quiet, so I assumed the worst,” Samatha says. “He wasn’t crying.”

Dylan Grant watched the monitors as the neonatal team worked on their son.

“He walked over to me, and he was like, ‘Hey, he’s fine,'” Samantha recalls her husband saying to her. And I looked at him, I was like, ‘What are you talking about?’ And he was like, ‘He’s just over there chilling.’

The newborn was breathing on his own, Dylan Grant relayed. The omphalocele did not rupture during delivery, and it wasn’t as big as doctors expected.

“It was a great feeling to give her great news,” Dylan Grant tells PEOPLE. “It was awesome. And becoming a dad was just a really good feeling.”

Samatha held her son and they named him Dawson (they only planned to name him Blakely if he didn’t survive.) “He was super cute,” she says. “I just cried. We were speechless.”

Dawson had his first surgery when he was 10 days old. It was eight hours long. Doctors took the skin off of the omphalocele, and pushed it and his liver and stomach organs back inside his body. With his cloacal exstrophy, his intestines and bladder were also outside his body, not inside the omphalocele but underneath it.

“Essentially, the liver is kind of in a protected bubble. And then underneath it, the intestines and the bladder were just completely exposed to the environment,” says Samatha. Doctors were able to put the baby boy’s intestines back inside and reroute them to make an ileostomy, a surgical procedure to change the way poop exits your body. This was needed because of his imperforated anus. He didn’t have the anatomy to fit a colostomy bag, and his bladder was still on the outside of his body, splayed open, his mom says, “so urine was always getting on the bag.”

As part of his condition, the boy also has a variation of spina bifida and a condition called vascular Ehlers-Danlos.

Dawson spent 96 days in the NICU. “It was rough,” Samatha says. “We became hands-on very quickly.”

In August, when he was 20 months old, Dawson had a second surgery. It was 16 hours and involved four different surgical teams: urology, general surgery, plastics, and orthopedics. This was his “full closure” surgical reconstruction to recreate his abdomen and put all of his organs inside his belly. Doctors were able to place a G-button, so he no longer has a tube in his nose. And instead of an ileostomy he now has a colostomy bag and a urostomy bag. The surgery was successful, Samatha says. But his bladder was too small to connect to the urethra so he can urinate out of his penis, so they had to make a urostomy bag which is likely going to be something he has for the rest of his life.

“He is a miracle baby,” says Passoni, 38, Director of the Complex Urologic Reconstruction Program at Texas Children’s Hospital. “Dawson, is the cutest little boy. He’s going to have more or less what we define as a normal life. The only thing that’s going to be different for him is going to be how he urinates and how he has bowel movements.”

In January 2025, Samatha gave birth to Dawson’s little sister, Savannah. When she got pregnant, because of her medical history, Samatha’s ob-gyn immediately sent her to a maternal fetal medicine expert who assured the couple that their daughter did not have any of her brother’s birth defects. The couple never had to worry that their daughter had the same rare condition.

“He would specifically also check for the same defects Dawson has to put us at peace of mind. And he’s like, ‘You see this? There’s no omphalocele. You see this? This is your baby’s butt hole. She has one. And this is her bladder inside her body.’ And we were like, ‘Thank you. Thank you.’ ”

On January 23, Samatha was hoping to celebrate a happier birth.

“Doctors told me, ‘Oh, your baby’s super healthy, you have no issues, you’ve got a big healthy baby,” Samatha says.

But instead, “I had a traumatic birth,” she says.

Her daughter got stuck in the birth canal for one minute and 40 seconds. The umbilical cord was wrapped around her neck — twice.

“She was unresponsive, completely,” Samatha says. “Thankfully, I was unresponsive too, due to pain. They actually had to resuscitate her, because she came out completely limp.”

The infant spent a week in the NICU before going home.

It was a learning curve for her parents. “I will say, it was kind of like being first-time parents, though,” Dylan explains. “We never changed a real diaper on Dawson. Never really got to feed Dawson like a real baby. We didn’t know what we were doing, honestly,” Dylan says.

Now 5 months old, Savannah lives with a paralyzed left shoulder. She has nerve damage from the delivery. The plan is to monitor until she’s 18 months old to see if she regains movement or needs surgery. “Doctors are pretty hopeful that the arm will heal itself,” Samantha says. She also has an eye shake, due to lack of oxygen during birth. “We’re watching to see if it’s permanent.”

Meanwhile, Dawson, now 2, is in feeding therapy, learning how to eat food from his mouth. Recently, his parent discovered he loves Bluebell Banana Fudge ice cream. 

Their son’s smiley attitude buoys the spirit of his parents as they raise two kids with high needs. He also inspires everyone in his family when facing their own medical challenges. For example, his father had heart surgery but told himself that “Dawson has gone through a lot worse.”

“That kid can be going through the worst thing ever, and he’s still smiling,” his mother says. “He blows our mind.”