Little miracles among us...the Clarks

By NOREEN HYSLOP

Managing Editor

Little did Preston and Elizabeth Clark of Dexter know just how much their lives would be altered when twins came into their lives. Neither did they know, they say, how blessed they would be.

When it was realized in the spring of 2011 that Liz was carrying twins, the couple was shocked, but overjoyed.

"There is no history of twins on either side of our families," Preston confirms, "so we were overwhelmed."

Before Liz was three months along in her pregnancy, though, doctors in Cape Girardeau learned through a routine sonogram that there was a problem developing with one of the identical twin boys Liz was carrying.

Carson, as he would be named, was diagnosed with a cervical teratoma -- a very rare tumor on the neck. The cause of a teratoma is unknown. The tumors themselves are rare, but cervical teratomas account for only about five percent of all teratomas. Even more rare is a cervical teratoma involving a twin pregnancy.

"We were immediately put in touch with doctors at St. Louis Fetal Care Institute," Preston explains. "We were there the next day, and Liz had a fetal echocardiogram, MRI, and a 3-D ultrasound."

The expectant couple also met with a team of doctors who would potentially play a role in the birth of their sons.

"We immediately had a plan to deliver at Cardinal Glennon," explains Preston, "and we met with most of the doctors who would be playing a role in the boys' birth. We were told initially that the tumor was the size of a clementine, just smaller than an orange."

Doctors needed to monitor the progress of the twins on a weekly basis, keeping a watchful eye on the size and characteristics of the tumor. As the babies grew, so did the teratoma. The tumor fed on blood -- the blood intended to keep the twins healthy in the womb. There was not only the danger of the tumor depriving the twins, especially Carson, of blood supply; it also had the potential of compromising his airway upon birth.

In October 2011, the Clarks were told they needed to move from the comforts of their Dexter home to an area in close proximity to Cardinal Glennon. They were still more than two months away from the twins' due date, but physicians insisted the gravity of the situation called for them to be closer to where their sons would be delivered.

Life was about to change for the couple who had just celebrated their first wedding anniversary. Preston is a mechanical engineer who works alongside his father, David Clark, in the family-owned Bootheel Tool & Machine in Dexter. Liz is a physical therapist and, until the move to St. Louis, had been employed at Select Therapy. The normalcy of returning home following a routine day at work was about to be indefinitely put on hold.

Staying with friends and family of friends in the St. Louis area, the Clarks anticipated the birth of the boys and coming home. That was a scenario that would not materialize for another five months.

It was the goal of the experts at the Fetal Care Institute to allow the twins to grow as long as possible without having the tumor compromise their survival chances. The longer they could remain without risk in the womb, the better.

In early November, however, after approximately two weeks in St. Louis and at 33 weeks gestation, doctors found that the tumor, as feared, was robbing Carson of his needed blood supply. His heart was not getting the proper blood flow to keep him healthy in the womb any longer. Liz was developing polyhydramnios, which doctors also feared. It meant that the tumor had grown so large that it was keeping Carson from swallowing amniotic fluid, causing much of the fluid to remain in the womb. It was relatively certain at that point that Carson's airway would be blocked upon his delivery.

On Nov. 8, 2011, a team of 42 surgeons, neonatologists, nurses and other specialists gathered at Cardinal Glennon to deliver Kellen and Carson Clark into the world.

"It was really a rare event," the twins' father explains, "because it is a children's hospital, and they very rarely deliver a baby there. Liz was moved to a neighboring hospital, St. Mary's, right after the delivery."

Even rarer was the fact that the occasion marked the first time in the history of the renowned Cardinal Glennon facility that a twin birth would take place utilizing the EXIT method of delivery. The EXIT method is defined as ex utero intrapartum treatment -- a type of modified C-section delivery in which the mother requires general anesthesia, which ensures a relaxed uterus. That permits the placenta to continue supplying oxygenated blood to the baby while the airway of the baby is being secured with either a breathing tube or a surgical tracheotomy.

The twins were delivered by C-section, with Carson's head and arms delivered first as he remained attached to the placenta. Doctors first worked to secure Carson an airway before fully delivering him. Once that airway was secured, they delivered Kellen, who had been positioned underneath his brother. Both babies were immediately taken to a twin room at the Dana Brown Neonatal Intensive Care Unit (NICU) within Cardinal Glennon.

Kellen Clark weighed in at 3 lbs., 13 oz. His brother weighed in at over 6 lbs., but nearly two and one-half lbs. of Carson's birth weight was defined by the teratoma. In actuality, their birth weights only differed by two ounces, with Carson as the heavyweight.

"We'd had ultrasounds every week for months," says Preston, "and we were told each time how big the tumor was getting -- the size of a softball and then the size of a cantaloupe -- but seeing it in real life, well, you just can't prepare yourself for that."

The teratoma encompassed Carson's neck and a large portion of the right side of his face.

"The interesting thing was that Carson's external jugular and external carotid artery ran right through the middle of the tumor, and so it had a major blood supply. That's why it grew so fast," Preston explains.

Three days later, on 11/11/11, Carson went into surgery at Cardinal Glennon Hospital where, for 10 hours, some of the most skilled hands in the country worked to remove the tumor that was more than one-third of Carson's body weight. A tracheostomy tube was also placed at this time to provide a safe and effective airway for Carson.

"We were told before the surgery that he may not make it out," Preston recalls. "He was given three times his blood supply during the operation."

The veins that led through the teratoma were severed and sealed off with titanium clips, with Carson all the while hooked to a heart and lung bypass machine called an ECMO (extracorporeal membrane oxygenation).

The Clarks had been cautioned as to how Carson might appear following surgery. The weight of the tumor had shoved his nose upward, forced his eyes shut, and his right ear was folded over at birth. Doctors couldn't assure the couple how Carson would look once he was free of the tumor.

"But after the operation," his father explains, "one of the doctors came out and told us that when the teratoma was removed, Carson's features just fell right into place. It was truly amazing."

Dr. Edmund Yang, who served as Fetal Care Institute Co-Director at the time, headed up the surgery. He had told the Clarks beforehand that Carson's airway and esophagus would be damaged, and they were. The surgery to remove the tumor did not repair the damage that was done. Carson's problems were far from over. He would spend the next four months in the NICU with two full-time nurses initially caring for him at all times. The ECMO would remain in use for six days following surgery, after which he was placed on a ventilator. In the months that followed, he was gradually weaned off the ventilator to CPAP and then to a trach collar for supplemental oxygen and humidified air.

On Nov. 23, 2011, the night before Thanksgiving, the Clarks held their sons together for the first time. It was an occasion they say they'll never forget.

Of that first time together as a family, Liz recorded in a journal, "I cannot explain the feeling of getting to hold you two for the first time together. My arms felt full and complete. Oh, how I prayed for this moment, and what a blessing it is."

The doctors, the nurses, and most of all the families of Preston and Elizabeth Clark marveled all the while as Carson surprised them with what his mother refers to as "one little miracle after another."

"He's a fighter," says Preston, looking back at Carson's first year.

The 2011 holidays were celebrated in the hospital. Nurses made the boys construction paper Indian feathers and pilgrim hats to mark Thanksgiving, and for Christmas Day their tiny heads peeked out of red holiday stockings, with a mirage of tubes trailing down Carson's stocking.

Kellen progressed well, advancing from a ventilator to CPAP to nasal cannula to room air over a three-day period. Still, he would remain hospitalized for nearly a month.

The family stayed in St. Louis and took turns alternating their time between the hospital and with Kellen. Finally, four months after making history at Cardinal Glennon, the Clark family, twice in size since they'd last seen home, headed for Dexter.

The household quickly became a beehive of activity. Carson came home with the tracheostomy in place. His condition was still extremely fragile. Preston and Liz Clark had been trained in his care, which included regular maintenance on the tracheostomy tube and, more intimidating, how to operate and maintain a cumbersome and noisy set-up called a trach collar that supplied humidified air and supplemental oxygen for Carson.

His father began the nightly routine, which still continues, of sitting up all night with his son, suctioning his airway as needed. Initially the procedure took place every hour or more, but is now every two hours or less. Two nurses still come to the home each day to split a 16 hour shift. The night nurse assists with the nightly suctioning routine.

"It's a two-man job," says Preston of the nightly task. Utilizing two people reduces the risk of contamination, he says, and provides the least disturbance of Carson's sleep.

Family members also remain in place on a regular basis. Elizabeth's sister, Sarah, is a nurse practitioner and has been a tremendous asset to the family, as have many other family members and friends.

Without a functional esophagus and with a compromised air passage, Carson has minimal swallowing capability. For all 15 months of his life, he has been fed through a G-tube, and his tracheostomy tube has remained in place. Without that device, which remains in place today, Carson's air supply would be cut off. For that reason alone, he requires 24-hour care. Once each week, his parents replace the tracheostomy tube.

"We have it down to a science," Liz says. "It takes a matter of a few seconds."

"We never heard Carson make a sound until he was almost four months old," Preston notes. It was at that age that Carson was equipped with a Passy-Muir valve, a one-way valve that allows him to breathe in through his tracheostomy tube but exhale through his nose and mouth -- as well as make noise. That ability has improved week by week. He can now be heard uttering and giggling.

Developmentally, he is not far behind his brother. His gross motor skills will be delayed, but it is expected that he will catch up with Kellen eventually. His speech and oral feeding will be a significant concern as he matures, and he will continue to receive speech therapy as the reconstructive surgeries are completed and his abilities to vocalize improve.

Kellen is walking these days, and Carson is right behind him in a walker, or crawling freely and climbing up to anyone sitting nearby. The two meet every visitor with a smile. Two nurses come to the Clark home for two different shifts each day, and Preston and Liz perform many of the medical-related procedures that sustain him. To care for his medical needs and still grant Kellen quality time requires at least two adults in the household at all times.

"The tracheostomy tube is what truly changes your whole lifestyle," Liz says. "The doctors are hopeful that down the road, after a series of surgical procedures, he will no longer need it."

All who have witnessed the first year of Kellen and Carson Clark's lives continue to marvel not only at their progress and at Carson's continued healing, but even more so at the parents of the two as they go about the business of counting their blessings each and every day. Carson will continue to present new challenges in the years ahead. Reconstructive surgeries will be performed over the next few years at Cincinnati Children's Hospital, where more airway reconstructive surgeries are completed annually than in all other hospitals in the U.S. combined. Those procedures, for Carson, will be aimed at granting him the ability to breathe on his own without the tracheostomy tube, voice his opinion and eat with a spoon instead of through a tube. Until that process is complete, each day is a challenge as the couple works side by side to protect him and to keep him healthy. New challenges are met every day -- always with a smile and an unspoken determination to overcome.

"Carson is the happiest child you've ever seen," says his father. "One of the nurses told me not too long ago that she could be having one of worst days ever, but when she walks in and sees Carson smiling from ear to ear, paddling toward her in his walker, all her troubles disappear. When you know what he's been through, and you see that smile, you realize you really don't have any problems at all."

"God gave us a challenge," Elizabeth says, "so He must have known we could handle it. We consider ourselves so blessed."