The struggle of the parents in the choice of prenatal surgery Risky

Luelle Ross looks like a child 1 year old, typical in many ways, playing with toys and a walk in the stroller. But while his life has just begun, there was a long way to her parents.

Luelle born before she was diagnosed with spina bifida and their parents decided, Shelly and Bobby Ross, the radical step that, while performing in the womb of her daughter.

Check out the full story on "Nightline" tonight at 00.35 clock ET

Spina bifida, a disease of the bone development is one of the most common birth defects . It affects about 1,500 babies in the United States each year, according to the National Institutes of Health .

In the first weeks of pregnancy is diagnosed, spina bifida occurs when the spine and the spine does not form properly, leaving a gap in the spine. Without treatment, babies can with the condition with developmental disorders, nerve damage or even born paralyzed.

"We were shocked," said Shelly Ross, 27. "They said, your options are to end, for this historic operation after the birth of spina bifida or is it the last operation in the womb, you may qualify for."

This new operation is performed while the baby is still in the womb, and the birth Luelle be aired in a new three-part series this week on PBS documented, beginning Tuesday "born twice: Stories Special Delivery Unit" by 20 clock with the title.

The documentary series examines the doctors of the Special Delivery Unit at the Children's Hospital of Philadelphia, as "CHOP" known for short and follows four families across the country for 14 months because they changed procedures to defects subject to correct birth life.

CHOP is one of the few hospitals in the country to perform fetal surgery. About 25 percent were carried out by the nearly 4,000 fetal surgery in the United States led to CHOP.

This year alone, the unit is more than 1,500 pregnant women chop evaluate and perform prenatal 150-200 operations, said hospital sources.

Dr. Scott Adzick, Head of Pediatric Surgery at CHOP was performing fetal surgery for over 30 years. Help families decide if surgery is right for them.

"Personally, I try to put myself in the place of parents, so I want for my son," said Adzick. "But if you I think the family and the child in this way, and you said in an honest and compelling way and honestly not the best I can for them, and then you know that they decide what they decide, and it is best for them. "

But this is not always an easy decision for parents opt for surgery in the womb, especially for a family like the horse, who are deeply religious.

"It was very difficult," Shelly Ross said. "You want to tell a doctor:" Here are your options, this is the best and we can guarantee that "But she could not, because of an operation could not say that they are not sure that [Luelle] would go. or that "there is no guarantee that it survive. "Both had risks, so it was very hard."

Ultimately, Shelly and Bobby decided to go before the procedure because they said they wanted their child the best opportunity they could to give a better quality of life.

"Shelly said," had to turn emotions and by the facts, "said Bobby Ross, 33rd

Dr. Julie Moldenhauer, medical Fetal Diagnosis and Treatment Center and the Director of the Special Delivery Unit CHOP tends to be the bearer of bad news for families in these difficult situations.

"A good day for me is when I do not do it to anyone complain," he said. "It's a good day."

Moldenhauer for advising parents every day about how to treat your baby state responsible. She was also the doctor who his decision to go surgery in the womb out in Rosses.

"It's hard to tell the parents, the news that they do not want to hear," says Moldenhauer. "Every pregnancy is maintained with expectations and that's life will be like for your child. What happens in this room, in the course of an hour, when you sit down and explain what this course in a few years you are you can imagine the touch of a family. "

For mothers who qualify for fetal surgery, the operation 19 to 25 weeks of pregnancy are performed.

"The reason why we chose to do this because the result increased by 50 percent," Bobby Ross said. "So there was not enough success for us to justify the bet."

To bifida in utero surgery Spina, while the mother is under anesthesia, doctors look for the safest place to make an incision in the uterus, enough to reach the baby. Once the uterus is opened, the baby will be revealed and the hole closed in the baby's spine to prevent further injury to the spinal cord again.

The team of highly qualified specialists performed surgery CHOP Shelly and Luelle in utero only about an hour, but the risks for mother and child could have been fatal, doctors said. Shelly had experienced complications during surgery, bleeding and broken respiratory problems.

Courtesy of Ross Family

PHOTO: Shelly Ross argues Luelle time after birth.

Shelly operation was successful, but then Shelly developed complications. Pregnant at 34 weeks was admitted to CHOP, and remained there until she gave birth. The family packed their lives in Massachusetts to move to Philadelphia, so they can be together full time.

After weeks of continuous monitoring hospital, gave birth to Shelly Luelle, at 6 pounds, 12 ounces, born and a small scar on the back of surgery in the womb.

"The derivation lu- -This is light and bright and clear, it is a bright and shining light," Bobby Ross said.

For patients Luelle as spina bifida, the operation is just the beginning. You will have to endure years of care and medical care, as it grows. It is a condition that will continue for the rest of his life.

"The fetal surgery for spina bifida is not a cure," said Dr. Adzick. "Under the right circumstances, you can make the best baby - the best opportunity to better chances for a normal mental development to go ... We have long term ... to follow these children to ensure that benefits are sustainable. " ,

But for this young family is Luelle a bright light. Not already in the coming years

"It is the kind of person that life is throwing the worst for it with a smile, for she will take already suffered a lot," Shelly Ross said. "But as soon as you walk in the door when she walks in the door with a smile and" hello ", you know, it was a light."