Before they were even born, twins Carson and Kellen’s lives were in danger because of a large mass growing on Carson’s neck. A special EXIT delivery procedure gave both boys the chance at life.
Preston and Elizabeth Clark were happy newlyweds, pregnant for the first time, and excited to welcome twin boys into the world, when something was found at their routine 22-week ultrasound. “We weren’t given a diagnosis until two days later at the SSM Health St. Louis Fetal Care Institute,” explains Elizabeth.
Carson had a cervical teratoma, a rare neck mass usually caused when reproductive cells grow abnormally in the neck, causing a solid tumor. These masses can become so large that the esophagus and airway may be blocked. If swallowing is blocked, then the baby cannot swallow amniotic fluid, which causes polyhydramnios, or too much amniotic fluid in the womb. Blockage of the airway can also prevent the baby from breathing at birth, which is a life-threatening problem.
“In the weeks that followed there were definitely times I wondered, ‘Why my baby?’ but really I was just focused on what we could do for Carson. I never really thought he wouldn’t make it,” recalls Elizabeth.
Starting in the 22nd week of the pregnancy, Elizabeth and Preston began making frequent trips from their home in southeastern Missouri to the St. Louis Fetal Care Institute so Carson and Kellen could be monitored as they developed. Frequent ultrasounds and fetal MRIs helped determine the severe nature and massive size of the mass on Carson’s neck.
The tumor was growing rapidly causing distortion of Carson’s airway and esophagus, and Elizabeth was developing progressive polyhydraminios. Because of the mass, and the impact it would have on Carson and Kellen’s arrival, a special delivery was planned at SSM Health Cardinal Glennon where pediatric experts would be immediately available to provide specialized care.
The mass, which was 2 pounds, 4.6 ounces—and similar in size to a cantaloupe, made a vaginal delivery impossible. Carson’s airway was so distorted by the mass, the team knew he wouldn’t be able to breathe on his own. They also knew they would need a significant amount of time to secure his airway and ensure his safety. This would only be possible through a specialized EXIT delivery, where Elizabeth’s placenta could be maintained to support both of the boys while Carson’s airway was secured.
The positioning of the two boys in-utero also presented a challenge. Carson was on top of Kellen, which meant we needed to get him out first, secure his airway, then deliver Kellen. Despite constant monitoring of Kellen during the procedure, there were still risks. “We had countless discussions with Elizabeth and Preston. As a team with the family, we all had to consider the health and safety of both of the boys,” recalls St. Louis Fetal Care Institute Nurse Coordinator Katie Francis.
Ultimately, the family chose to move forward with the EXIT delivery. The surgery team practiced and prepared for the rare twin EXIT delivery for weeks, running through scenarios and complications that might arise. On Nov. 8, more than 30 surgeons, neonatologists and nurses assembled at SSM Health Cardinal Glennon to bring Carson and Kellen into the world.
Elizabeth was placed under general anesthesia and a delivery similar to a cesarean section was started. While using a special device to open the uterus and prevent uterine bleeding at the same time, Carson’s head and arms were delivered. But, he remained attached to Elizabeth’s placenta, which served as life support, while SSM Health Cardinal Glennon Ear, Nose and Throat Surgeon Dr. Dary Costa and the team secured an airway and made sure he was stable enough for delivery.
After Carson was delivered, baby Kellen made his entrance and the two went to a special twin room in the Dana Brown Neonatal Intensive Care Unit (NICU) at SSM Health Cardinal Glennon.
Even though he had made his entrance, Carson had a challenging road ahead. The neck mass wasn’t only blocking his airway, it was also stealing blood flow and putting a strain on his small heart. Three days after he was born he underwent a 10-hour surgery to remove the neck mass, which was one-third of his body weight. Bit by bit, surgeons were able to remove the mass, which had grown along the right side of his neck, face, and head.
After surgery Carson was placed on extracorporeal membrane oxygenation (ECMO), a heart-lung machine that would help him breathe and circulate blood while his body healed. Over the next three and a half months, Carson continued to get stronger. He was removed from extracorporeal membrane oxygenation ECMO, then the ventilator and was breathing on his own with the help of a simple oxygen machine by the time he made the trip home.
At six months old Carson and Kellen were doing great. “Their smiles and laughter are contagious,” says Elizabeth. Kellen was just about to roll over and loved standing up with support, as well as hearing himself sing, while Carson really enjoyed lying down, kicking his feet and waving his arms. He still had a G-tube and tracheostomy, requiring supplemental oxygen, but doctors see no reason to think he would not grow and develop into a healthy little boy.