IE 11 is not supported. For an optimal experience visit our site on another browser.

Baby receives rare, lifesaving surgery mid-birth to help him breathe

When the couple first heard their son had a rare condition, they thought his birth would be normal. Then they learned the baby needed surgery mid-birth.
Lauren Sanford and Josh Setten feel so grateful that everything went well with baby Oliver's birth, which involved a surgical procedure in the middle of his delivery.
Lauren Sanford and Josh Setten feel so grateful that everything went well with baby Oliver's birth, which involved a surgical procedure in the middle of his delivery.Courtesy Lauren Sanford

When Lauren Sanford was 18 weeks pregnant, she went for her anatomy scan and her doctor noticed her baby had a smaller lower jaw. Tests revealed that Oliver had Pierre Robin sequence, a rare condition that causes head and facial anomalies. In some cases, the baby’s airway is blocked, making birth challenging.

“We were so excited,” the 32-year-old from Tacoma, Washington, told TODAY. “Hearing that there may be something wrong was initially very scary.” 

She and her husband, Josh Setten, originally thought that she’d delivery vaginally. But when she was 32 weeks pregnant, she learned that Oliver would need surgery in the middle of a Cesarean-section delivery.

When Lauren Sanford was pregnant she learned her son, Oliver, had a rare condition that affected his breathing. She had no idea that meant he would have a unique delivery.
When Lauren Sanford was pregnant she learned her son, Oliver, had a rare condition that affected his breathing. She had no idea that meant he would have a unique delivery.Courtesy Lauren Sanford

“They saw how compromised his airway was,” she explained. “There was pretty much no discussion. It was like ‘The safest best for delivery is the EXIT procedure and here’s what that is.’ My husband and I were like, ‘Oh wow.’”

Pregnancy and diagnosis

When Sanford became pregnant with Oliver, she was thrilled, especially because her pregnancy seemed perfectly healthy.

“I felt pretty good,” she said. “The pregnancy portion of this adventure was probably the most normal part.”

After doctors noticed Oliver’s undersized lower jaw, called micrognathia, and cleft palate, they explained his condition.  

“My doctor, from that point on, was like ‘I’m 99% sure he has Pierre Robin sequence,’” Sanford said. “For a lot of things that are a fetal diagnosis, it’s really hard to tell for sure until they’re actually born.”

Sanford rushed home and researched Pierre Robin sequence, which she had never heard of before. 

“(It) did make me feel a lot better. ... Pierre Robin sequence has such a vast range of severity. So some babies will need very little medical intervention. Some babies will need a lot of medical intervention,” she said. “After the first two years of life, things get a lot easier.”


Baby Oliver had a rather unconventional birth. Halfway through his C-section delivery, he underwent surgery to help him breathe.
Baby Oliver had a rather unconventional birth. Halfway through his C-section delivery, he underwent surgery to help him breathe.Courtesy Lauren Sanford

She also joined online support groups for parents with children with Pierre Robin sequence. The condition can cause a variety of structural differences in the head and face, including a small bottom jaw, a cleft palate and a tongue that rests too far back in the mouth, which blocks the airways, according to the National Library of Medicine. But the couple didn’t know what that meant for Oliver.

“My husband was like, ‘Is this a death sentence? Is this a really dangerous disorder?” Sanford recalled. “And our doctor was like, ‘Absolutely not. Babies with Pierre Robin sequence go on to live very normal lives.”

Later in the pregnancy, Sanford wondered if she should get a second opinion about her birth plan and visited a doctor at the UW Medical Center.

“My greatest fear was if he was born and then it was an emergency situation,” Sanford said. 

That’s when she learned that Oliver needed the EXIT procedure.

“It was absolutely a shock,” she said. “We had been going along blindly in the beginning of my pregnancy, thinking ‘Oh it’s probably going to be fine.’”  

EXIT procedure

Dr. Shani Delaney, a maternal fetal medicine doctor at the University of Washington, was part of the team of 30 people (from UW Medicine and Seattle Children's Hospital) that delivered and operated on Oliver. She said doctors rarely perform the EXIT procedure — which stands for ex utero intrapartum treatment — because it is so complicated and they don’t frequently see babies with compromised airways requiring such intervention.

“They’re all rare anomalies … that’s the one part that is good,” she told TODAY. “It is a complex procedure to put together.”

Baby Oliver is thriving at the hospital. He can't go home quite yet; his family is waiting for a home health nurse to help him because he has a trach to help his breathing.
Baby Oliver is thriving at the hospital. He can't go home quite yet; his family is waiting for a home health nurse to help him because he has a trach to help his breathing.

On Nov. 16, Sanford was wheeled into an operating room. For Setten it felt surreal to watch it.  

“It was incredible,” Setten, 32, told TODAY. “They had his head and one arm out so they could put an IV in him while he was still attached and so they could intubate him through the nose, the mouth.”

For about seven minutes, Oliver wasn’t breathing as doctors tried inserting a breathing tube in his mouth, which didn’t work. While that sounds scary, Sanford’s body was helping Oliver.

“We really are utilizing mom’s placenta,” Delaney, explained. “The EXIT procedure is taking advantage of the fact that mom has been a heart lung machine for nine months and so our goal then is basically pause a delivery in the middle so that we can operate on baby, but still have the benefit of the heart-lung machine.”

That means he isn’t starved for oxygen.

“His body and brain and all his organs are still getting all the oxygen they need because he’s still getting all of it from the umbilical cord,” she said.

Delaney’s ear, nose and throat colleagues were able to slip a tube down Oliver’s nose so he could breathe. But they had to work against the clock.  

“We have to keep moving because eventually nature will do what nature’s meant to do, which is separate that placenta,” she said. “Then we’re out of time.”

Lauren Sanford and Josh Setten wanted to share their experience with their son having the EXIT procedure so that other families who might have a baby that needs one won't feel scared or alone.
Lauren Sanford and Josh Setten wanted to share their experience with their son having the EXIT procedure so that other families who might have a baby that needs one won't feel scared or alone.Courtesy Lauren Sanford

At one point, a doctor snapped a picture so the couple could see what was happening.

“We both started crying, like ‘Holy crap! This is actually happening,’” Setten recalled.

Recovery

After delivery, Oliver was transferred to Seattle Children's Hospital where he spent 41 days in the neonatal intensive care unit and then moved to another unit. He has a tracheostomy to help him breath and a feeding tube. While he’s “exceeding the expectations,” he cannot go home without someone to watch him constantly. The family is on a waiting list for home health care, which can take at least six months, and they’re learning how to care for him.

“He is doing great,” Sanford said. “He’s able to lie on his back and take in the world.” 

Despite having to go through a rare surgery mid-birth, baby Oliver is thriving. He just started smiling and loves looking at all the things around him in the hospital.
Despite having to go through a rare surgery mid-birth, baby Oliver is thriving. He just started smiling and loves looking at all the things around him in the hospital.Courtesy Lauren Sanford

He’ll need surgery to repair his cleft palate, lengthen his jaw and open up his airway. But he’s too tiny for that now.

“Before the trach he would basically be choking on his tongue. It would fall back in his mouth because his jaw is so small and because of the cleft in his palate it would go up into his nose as well,” Setten said. “The trach is a replacement Band-Aid.”

They’re still in Seattle Children’s Hospital and his parents enjoy watching him grow and curiously absorb everything he can see with his “big beautiful gray eyes.”

“He’s a happy baby. He’s breathing. He’s growing,” Setten said. “The dude lives a great life … He’s started to smile recently, which is really really awesome.”