Angelie Acosta
After learning her baby would be born with esophageal atresia, Laurel sought the care of surgeon Steven Rothenberg, who would perform a lifesaving procedure on her newborn.
As Laurel Hirsch sat in the waiting room at the maternal-fetal specialist’s office, her anxiety grew. At 33 weeks pregnant, she had been referred to the specialist because an ultrasound showed her unborn baby was measuring very small. She hadn’t wanted to go to the appointment at all. She was dreading the unknown and — due to business travel — she had to attend the appointment alone. As she waited her turn for the scan, “I saw the room that I was supposed to go into and watched two women come out before me,” Laurel recalls. “The first one looked distressed and like she was crying. Then the second one looked even worse. And I thought, ‘oh no. I’m the third one.”
Unfortunately, Laurel’s fears were realized when, during the exam, she noticed a look of concern and discomfort cross the ultrasound tech’s face. The tech excused herself to retrieve the maternal-fetal physician who was soon by Laurel’s side to explain. “The doctor told me the baby had esophageal atresia,” Laurel explains. “They caught it on the ultrasound because [the baby] was swallowing actively, and they noticed there was no stomach bubble.”
An ‘incomplete’ esophagus
Esophageal atresia (EA) is a congenital birth defect that affects an estimated one in every 4,000 babies in the United States. EA occurs when the esophagus (food tube) doesn’t properly form during pregnancy and instead there are two separate sections of the esophagus that do not connect. EA often occurs with other birth defects but can be present on its own.
After describing the condition to Laurel, the specialist explained that she would be getting an amniocentesis to see if the EA was related to any other conditions. This test removes a small amount of amniotic fluid to check for the presence of genetic and chromosomal conditions. “They admitted me directly to the hospital from that appointment and I had to wait three days in the hospital in Colorado Springs to see what the results of that amniocentesis were,” Laurel details. “Luckily, the results showed that [the baby] did not have [other conditions].”
A plan for minimally invasive repair
Despite that wonderful news, the team still wanted to have Laurel moved to Denver immediately so she could be at HCA HealthONE Presbyterian St. Luke’s and HCA HealthONE Rocky Mountain Children's at Presbyterian St. Luke's. It is there that Steven Rothenberg, MD, a world-renowned pediatric surgeon at Rocky Mountain Children's at Presbyterian St. Luke's, would be tapped to perform a lifesaving procedure on Laurel’s baby after delivery, repairing the esophagus during a delicate, minimally invasive procedure. Dr. Rothenberg pioneered this advanced technique, which is performed through several tiny incisions instead of one large, open incision. This reduces the risk of infection, lessens blood loss, minimizes scarring and decreases complication risks.
In addition, Laurel would be receiving her obstetric care at Presbyterian St. Luke's, which is connected to Rocky Mountain Children's at Presbyterian St. Luke's, where the baby will be cared for in its Level IV neonatal intensive care unit (NICU) before and after the surgery with Dr. Rothenberg. On June 8, 2016, Laurel was transported via helicopter from Colorado Springs to Denver.
Baby Angelie arrives
A Cesarean section was performed the next day. On June 9, 2016, baby Angelie was born at 33 and a half weeks, weighing only two pounds, 11 ounces. Angelie was taken to the NICU and Laurel was given time to rest and recover. “The next day, Dr. Rothenberg came into my room. I was still groggy, but I remember introducing myself. He explained that he was the surgeon who would eventually operate on Angelie but that she had to be in the NICU for a while to grow. Her gap [between the sections of the esophagus] was very large and, at only 33 weeks, she was very small.”
For three months, Angelie grew in the NICU and Laurel spent as much time as possible with her, sleeping in the nearby Ronald McDonald House. That fall, Angelie was finally big enough and strong enough to have the surgery. The surgery was successful, but the recovery was still significant. She remained in the high level NICU until December, with time on a ventilator, on paralytics, with chest tubes, having bilateral vocal cord paralysis and even spending time with a tracheotomy (trach) as a result. As a registered nurse herself, Laurel had some understanding of the medical needs of her baby, but her experience had been with adult patients. “It was all surreal. She really went through the ringer, but Dr. Rothenberg was truly amazing. He is an angel,” Laurel explains.
Healing, growing and eating!
Angelie was able to go home in mid-December in time for Christmas but ended up having a second procedure early the next year. The Nissen fundoplication procedure, which was also performed by Dr. Rothenberg, tightens the junction between the esophagus and stomach, assisting in acid reflux, a common side effect of repaired esophageal atresia.
As the years went on, Angelie grew and healed. For nutrition, she required a gastrostomy tube (g tube) for a time, but was eventually weaned from it and now is eating and drinking by mouth normally. Today, Angelie is a healthy, happy second-grader with straight As. A lover of princesses and Barbie, Angelie has no memory of the lifesaving procedure Dr. Rothenberg and team performed during the first few months of her life. “She’s had a few effects like a little bit of a raspy voice, and she graduated from speech therapy recently; she still has acid reflux, but she’s doing great,” Laurel says. She wants other parents to know that while the diagnosis of EA can be overwhelming and scary, support is out there. “I just want parents to know they are not alone. There are support groups on Facebook for EA families, for example,” she encourages. “It is really tough sometimes — you feel like your baby is going through so much pain and it causes you so much stress, but it’s helpful to know that she doesn’t remember any of it, and she is doing amazing now. I’m just so thankful for that.”
To learn more about pediatric surgery and Dr. Rothenberg, visit the HCA HealthONE Rocky Mountain Pediatric Surgery Denver website.