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DALLAS — A pair of formerly conjoined twins were able to leave the hospital and feel the sun on their face for the first time after more than eight months of intensive therapy following their separation surgery.
Jenni Enzell of Dallas, Texas, was shocked when she found out she was pregnant in November 2012. She and her husband, Dave, already had two sons, Ethan and Liam. Dave was working as a field geologist and Jenni was working as a speech pathologist in a school.
“We were very surprised, but mostly shocked,” Jenni wrote on her blog, The Enzell Twins. “We had not planned this. Jan. 3 was the first appointment with my O.B., and we found out we were having twins. Again we were surprised, but mostly shocked.”
The news
Her pregnancy was as normal as can be expected, with just the regular pregnancy symtpoms of nausea and exhaustion. Jenni has Type 1 diabetes, so she was seeing a high-risk doctor just to be safe. During her 17-week appointment, she received even more shocking news.
“The ultrasound tech came in and began the imaging process. There they were — our beautiful babies. Two heads, two hearts, four arms and four legs,” Jenni wrote. “As I was admiring my babies, I couldn't help but ask, 'Can you tell if they are conjoined?' Because something was not right.”
The ultrasound tech confirmed from their position that they were conjoined.
“I have never experienced a moment in my life when time has stopped, when the only thing I feel is the pounding of my heart," Jenni wrote.
I have never experienced a moment in my life when time has stopped, when the only thing I feel is the pounding of my heart.
–Jenni Enzell, upon finding the twins were conjoined
The ultrasound also revealed they were having twin boys, that they shared a liver, and they had holes in their hearts.
“Once we found out about the boys' condition, our 'easy pregnancy' was bombarded with moral, ethical and very emotionally hard questions, and very few easy answers,” Jenni told KSL.com.
Conjoined twins occur once in every 200,000 live births, reports the University of Maryland Medical Center. Approximately 40 to 60 percent of conjoined twins are still born. About 35 percent only survive the first day. The overall survival rate is between 5 and 25 percent, and females are more likely to survive than males.
Despite these odds, the Enzells decided to continue the pregnancy, despite knowing the boys might not make it to the delivery room alive.
The delivery
Once doctors knew the Enzells were keeping the twins, Jenni said, her advanced maternal medicine team came up with a prenatal and delivery plan, which included neonatal specialists for each boy. The delivery room would have at least 15 people ready and waiting to help the twins once they were born.
The doctors planned on delivering the twins on July 18, 2013, but Jenni went into labor the day before.
“While I was panicking, the doctors and nurses methodically prepared everything for the sooner-than-expected arrival of the twins at 36 weeks and three days,” she told KSL.com.
On July 17, the caesarean section went as smoothly as possible at the Medical City Children's Hospital in Dallas and the doctors were able to quickly stabilize the twins, who were named Emmett and Owen. Jenni had a hard recovery for the first few days and wasn’t able to see her babies very often.
“Emmett and Owen are considered omphalopagus twins, meaning they were conjoined at the belly,” she told KSL.com. “More specifically, they were conjoined from the xyphoid process (just below the sternum, or breastbone) to approximately the belly button. They shared internal organs as well — primarily the liver and the small bowels (small intestines). Conjoined twins have a very limited chance of survival.”
It was tricky the first few weeks to make sure both boys' bodies were working correctly. At first, Emmett's kidneys were doing most of the work and Owen's kidneys started to shut down, Enzell wrote on her blog. From lots of imaging and tests, doctors were able to stablilize their kidney function. Despite these small successes, Enzell was told the separation would need to occur sooner rather than later for the twins to survive.
The surgery
Emmett and Owen were just 6 weeks old when their doctors performed the nine-hour surgery to separate them. Since 1950, at least one twin has survived the separation surgery about 75 percent of time if the hearts were completely separate. Doctors estimated the boys had a 40 percent to 50 percent chance of surviving their own operation.
The surgery would have four phases, Enzell wrote on her blog. First they would separate the liver and surrounding blood vessels. Then they would separate the duodenum. Next, doctors would move to the small bowels and separate those. And finally, the surgeons would need to figure out how to cover the incisions.
"The surgery could not have gone better,” Jenni told KSL.com. “The OR nurse continually called and updated us with positive and encouraging news until sometime after 3 p.m., she called to tell us that the boys were being moved to separate tables. Dave and I were speechless, and I sobbed. It was incredible, and unbelievable.”
The recovery
The boys experienced quite a few problems the next several months and had to be constantly connected to tubes and wires to make sure their systems were working correctly.
Because they had to be monitored closely with lots of equipment, they had to recover separately and weren’t allowed to be near each other during their recovery. Jenni was elated when the boys could play together for the first time in March of this year.
“They are still learning what that means, and they will often either just stare at each other, or at us, to see what the hubbub is all about, but occasionally, a little arm will reach out to touch the other's arm or face,” Jenni said. “When this happens, there is always a frenzied flurry of people snapping pictures and ooh-ing and ahh-ing over them.”
After months of intensive rehab in the hospital, the boys were finally able to leave last week and see outside for the first time.
“They couldn’t even open their little eyes,” Jenni told ABC News. “The sun was so bright, I shaded Owen’s face.”
Emmett and Owen are currently at the Baylor Our Children's House so they can receive therapy and skilled nursing 24 hours a day. The Enzells need to learn how to administer breathing treatments and manage their feeding pumps.
“Dave and I receive training to learn how to best care for them. Our stay could be as little as three to four weeks or as long as six to eight weeks,” she told KSL.com. “Once we have been trained, and the boys indicate that they are ready for home, we will bring them home with very cheerful and blessed hearts.”
You can follow the Enzells' Facebook page for the latest updates on the twins.
