Twice Born–Stories from the Special Delivery Unit (2015), by the Public Broadcasting Service and Trailblazer Studios

In 2015, the Public Broadcasting Service, or PBS, released a three-part documentary series, Twice Born–Stories from the Special Delivery Unit, hereafter Twice Born, that follows several pregnant women and their experiences with fetal surgery. Trailblazer Studios produced the film, which predominantly features two women, although it includes the stories of many women. The two main women are pregnant with fetuses diagnosed with physical deformities. One woman’s fetus is diagnosed with spina bifida, an incomplete closure of the fetus’s spinal column. The other woman’s fetus is diagnosed with an oral teratoma, a tumor of the mouth. All the pregnant women in the series went to the Children’s Hospital of Philadelphia, or CHOP, in Philadelphia, Pennsylvania, to have in utero surgery to correct the fetus’s birth defects. Twice Born examines the benefits and risks of performing surgery on a fetus still in the pregnant woman’s uterus. Due to the popularity of PBS, the documentary reached a wide audience and brought the topic of in utero surgery to the public’s attention.

In the 1980s, researchers proposed the idea of treating birth defects in utero, or while the fetus was still in the womb. According to Nick Scott Adzick, the chief surgeon and director of the Center for Fetal Diagnosis and Treatment at CHOP, skepticism surrounded the idea and at medical conferences, few medical professionals took the proposal of in utero surgery seriously. Even with the skepticism, some medical professionals began attempting in utero repairs of birth defects like spina bifida. In the early 1980s, Alfred de Lorimier and Michael Harrison, pediatric surgeons at the University of California, San Francisco in San Francisco, California, used an open hysterotomy, or an incision through the pregnant woman’s abdomen and into the uterus, to repair fetal myelomeningocele, a common form of spina bifida. In 1997, Noel Tulipan, a pediatric neurosurgeon, performed a successful in utero repair of spina bifida. Following Tulipan’s success, in utero surgery became more common, and several hospitals became known for such surgeries.

One such hospital was the Children’s Hospital of Philadelphia, where surgeons began performing in utero surgeries in 1995. In 2015, over 500 women pregnant with fetuses diagnosed with birth defects went to the Children’s Hospital of Philadelphia to be evaluated as possible candidates for the surgery. Before having the surgery, both the pregnant woman and the fetus must undergo testing, such as ultrasounds and magnetic resonance imaging (MRI), to be considered as possible candidates for in utero surgery. Once the pregnant woman and fetus have undergone testing, a group of doctors gather to discuss the test results and decide what the best treatment option is. Not all women and fetuses are eligible for in utero surgery. Women who are not eligible have the option to terminate their pregnancies or proceed with the pregnancy without in utero surgery.

In 2015, PBS produced the documentary series Twice Born to explore how a woman gets from a diagnosis of fetal anomaly, to a potential treatment, to giving birth. The series predominantly follows two women pregnant with fetuses diagnosed with birth defects, although the stories of other women are also included. The series is divided into three parts. Part one of Twice Born introduces two pregnant women undergoing testing for the possibility of being candidates for in utero surgery. Part two of the documentary series continues following both pregnant women from part one as one of the women experiences the aftermath of in utero surgery. Concluding the third part of the series, the filmmakers show both women as they prepare to go home from the hospital with their infants after giving birth.

The first part of Twice Born, which aired on 31 March 2015, introduces two women pregnant with fetuses diagnosed with birth defects. The first woman, Shelly, appears with her husband, Bobby. In the eighteenth week of her pregnancy, Shelly has an ultrasound, an imaging technique to produce images of the fetus. After that ultrasound, Shelly’s physician diagnosed her female fetus with myelomeningocele. The physicians explain that myelomeningocele, the most frequent and severe form of spina bifida, is a condition in which the bony spinal column does not develop correctly causing an opening of the spine and exposure of the spinal cord. As a result, a small sac often forms along the spine containing cerebrospinal fluid. According to Twice Born, myelomeningocele affects 3.4 infants per 10,000 live birth in the United States. Of those infants affected, ten percent die of myelomeningocele. It can cause paralysis, the inability to control bowel movements, and hydrocephalus. Hydrocephalus consists of an accumulation of too much cerebrospinal fluid in the brain and can cause impaired bladder control, balance problems, and progressive mental impairment.

Shelly explains that pregnant women who have a fetus diagnosed with myelomeningocele are often presented with three treatment options. Those options are terminating the pregnancy, having in utero surgery to repair the spinal opening, or having postnatal surgery to repair the opening. Postnatal surgery entails surgery on the infant within the first twenty-four to forty-eight hours after birth. In the documentary, Shelly and her husband detail their decision-making progress after receiving the diagnosis. After learning about the possible treatment options, Shelly, in the nineteenth week of pregnancy, undergoes the two-day testing process to determine if in utero surgery is an option. As part of the testing, Shelly and her fetus undergo an MRI to gain information about how the fetus’s brain is developing. In addition, her physician performs an ultrasound to see where the myelomeningocele sac is located on the fetus. Typically, the higher the location of the sac on the fetus’s spinal column, the more nerves are affected, which can result in paralysis of the fetus’s legs.

Shelly and her husband describe in the series that the test results indicated that Shelly and her fetus were not candidates for in utero surgery. As they explain, that was because her fetus did not have hindbrain herniation. Hindbrain herniation occurs when the base of the brain is pulled into the spinal canal and can affect hand coordination and motor skills. Toward the end of part one, Shelly’s physicians suggest that Shelly undergo testing again, three to four weeks later, to determine if her fetus had developed hindbrain herniation. Although it is not mentioned in the documentary, Adzick notes that if a fetus has hindbrain herniation, once the infant is born, it will have to have many post-natal surgeries to correct the condition. Therefore, if a fetus has hindbrain herniation in the womb, surgeons will perform in utero surgery to correct it earlier and prevent the post-natal surgeries. As the documentary continues, Lesly and her fetus are introduced.

Twenty-one year old Lesly found out that her fetus was diagnosed with an oral teratoma. An oral teratoma is a mass of abnormal cells that can consist of hair, teeth, muscle, fat, nerve tissue, and bones that resemble other bones in the human body. The large mass in the mouth can block the fetus’s airway. As detailed in the documentary, Lesly was given two treatment options, to terminate the pregnancy or to undergo an in utero surgery.

In the first part of the PBS series, Lesly chooses in utero surgery as the treatment option for the fetus and underwent the procedure. The in utero surgery for the treatment of oral teratoma is called an exit procedure. During an exit procedure, a surgeon delivers the head and arms of the fetus to establish an airway prior to cutting the umbilical cord between the fetus and the mother. As part of the documentary, Holly Hedrick, an attending pediatric and fetal surgeon at CHOP, performs the exit procedure on Lesly. Hedrick makes an incision in Lesly’s lower abdomen and then delivers the fetus’s head and arms through the incision. Once the fetus is partially delivered, Hedrick works to establish an airway. However, the airway was too small and she had to perform a tracheotomy, an incision in the windpipe. After completing the tracheotomy, Hedrick delivers the fetus and removes more than half of the mass from the infant’s mouth. As part one of Twice Born concludes, Lesly sees her infant for the first time.

Part two of Twice Born aired on 7 April 2015, and continues with Shelly’s story. Shelly has undergone another MRI showing that hindbrain herniation was present in her fetus. Therefore, Shelly and her fetus are candidates for in utero surgery. Prior to undergoing the surgical procedure, Shelly has to acknowledge the benefits and risks of the surgery, which are explained to her during the documentary. According to the series, the benefits of in utero surgery include improved motor function, specifically in the legs, and the increased ability to walk by the age of two. Along with the benefits of the surgery, the show details the main risk of in utero surgery, premature birth. Premature infants have a lower chance of survival due to their underdeveloped lungs. In the documentary, Shelly accepts the benefits and risks of the in utero surgery and proceeds with the procedure.

In the middle of the second part of Twice Born, Shelly, twenty-two weeks into her pregnancy, undergoes in utero surgery. Adzick leads the procedure along with a team of specialists. Adzick puts Shelly under anesthesia and makes an incision in her abdomen to expose her uterus. Once Shelly’s uterus is exposed, Adzick determines the best place for a uterine incision with an ultrasound. The best place to make an incision is where there are no fetal parts, umbilical cord, or placenta, which cutting could result in injury to the fetus. After Adzick makes an incision in the uterus, a neurosurgeon repairs the fetus’s exposed spinal column. Once the neurosurgeon is finished, Adzick sutures Shelly’s uterus back together, leaving the fetus inside the womb.

In part two of the series, the series introduces Tina and her husband, Brion. Seventeen weeks into her pregnancy, Tina receives her first ultrasound and finds out she is having twins that were diagnosed with twin to twin transfusion syndrome. Twin to twin transfusion syndrome is a birth defect that occurs among identical twins who share one placenta. In twin to twin transfusion syndrome, abnormal blood vessels form in the placental and result in an uneven distribution of blood between twins. As a result, one twin receives less blood and becomes dehydrated and the other twin receives too much blood and develops high blood pressure. In the documentary, Tina undergoes another ultrasound. In the ultrasound, Tina and Brion learn that the twin fetuses have died due to twin to twin transfusion syndrome. Four days after the ultrasound, Tina gives birth to the deceased twin girls. As the second part of the documentary continues, Lesly awaits her infant’s surgery.

In continuation of part two of the documentary, the show focuses on Lesly’s infant, Lilly, who was awaiting surgery to remove the rest of her tumor. Lesly and Luv Javia, an attending physician with the Division of Otolaryngology at CHOP, discuss the next steps of Lilly undergoing surgery to remove the remnants of the tumor from her mouth. Javia performs surgery on Lilly and successfully removes the rest of the tumor form her mouth. Due to the success of the surgery, Lilly has full use and function of her tongue. As part two of the series comes to an end, Lilly goes home with Lesly for the first time after being in the hospital for four months. The final part of Twice Born entails Lilly embarking on another surgery and Shelly giving birth to a female infant.

On 14 April 2015, the final part of Twice Born aired, and in it Shelly gives birth to Luelle at thirty-six weeks and six days’ gestation. In the documentary, physicians ultrasound Luelle’s head to detect for hydrocephalus. They find that the size of the fluid-filled cavities, or ventricles, in Luelle’s brain have increased and they diagnose her with hydrocephalus. In addition to the ultrasound, a neuropsychologist examines her to see if she is meeting cognitive milestones for her age group. After the exam, the neuropsychologist concludes that because of the myelomeningocele, Luelle is behind in verbal and speech development. Following the conclusions of the neuropsychologist, Benjamin Warf, professor of Neurosurgery at Harvard Medical School in Boston, Massachusetts, gives Luelle an MRI. From the MRI, Warf concludes that Luelle’s ventricles had shrunk and she would not have to have brain surgery. As the show concludes on Luelle, Geneva and Reggie are introduced.

In the middle of the third episode, Geneva and her husband, Reggie, are introduced as they learn that their fetus was diagnosed with a fetal urinary tract obstruction. A fetal urinary tract obstruction stops the flow of urine in the fetus. When the urine flow stops in the fetus, it can cause an enlarged bladder, enlarged kidneys, and possibly death. Geneva receives an ultrasound to see how the fetal urinary tract obstruction is affecting her fetus. The ultrasound shows the fetus is suffering from an enlarged bladder, more than double the size of a normal bladder, and enlarged kidneys. Physicians present two treatment options to Geneva and Reggie, to terminate the pregnancy or to undergo in utero surgery. In the series, Geneva and Reggie decide to proceed with in utero surgery. Prior to obtaining the surgery, Geneva undergoes an additional ultrasound to view how the fetal urinary tract obstruction is progressing. The results of the ultrasound show that the fetus has started to pass urine again, indicating in utero surgery is no longer required. As the documentary nears its end, Geneva gives birth to her son, Ricky. After birth, Ricky undergoes a minor surgery for urinary obstruction. As the show concludes its story on Ricky, it returns to Lilly, who is awaiting plastic surgery on her lip.

The last part of Twice Born shows Lilly receiving plastic surgery to close the left side of her lip. Due to the large tumor, the left side of Lilly’s lip is stretched and the resulting excess skin is removed during the surgery. During the procedure, Javia inserts a camera through Lilly’s mouth to her windpipe to look at the tracheotomy that was performed at birth. Javia’s goal is to close Lilly’s tracheotomy, but Lilly’s airway is too small and the tracheotomy has to be left in place. As the documentary ends, Lilly can successfully eat and drink on her own.

Twice Born, the three-part documentary series, acknowledged the benefits and risk of in utero procedures. On 21 September 2016, PBS was awarded the Outstanding Science and Technology Programming Emmy. As of 2017, more than 1200 fetal surgeries have been performed at CHOP since 1995 and a fetal family reunion is held every summer for the families.