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The Campbell's CDH Story 
 

“Each new life, no matter how brief, forever changes the world.” This famous quote exemplifies the difference Parker Campbell made during his short life.

Parker was diagnosed with Congenital Diaphragmatic Hernia (CDH) when his mother Julia was 20 weeks pregnant with him. “I found out that they suspected something was wrong when I went to my 19-week ultrasound,” Julia recalls. “It was confirmed 10 days later.” Julia and husband Dustin were referred to the St. Louis Fetal Care Institute, where the diagnosis was finalized. “Parker had a severe left-sided CDH,” says Dr. Mike Vlastos, director of the St. Louis Fetal Care Institute.

“His liver was positioned up above the diaphragm, and he was suffering from pulmonary hypoplasia, meaning his lungs were smaller than they should be.” “At one point I had a reality check that even though it took me three years to get pregnant and get to this point I might not come home with a baby in the end,” Julia says.

 “Not long after that I met with the wonderful staff at the Fetal Care Institute. They were so welcoming and understanding from the moment I walked in the door. They never gave me false hope that things would be fine. They were realistic with me and always made sure I understood everything that was being said and done.”

Because Parker’s CDH was so severe, the family decided to move forward with hydrogel tracheal occlusion surgery, a new procedure that was being tested at the Fetal Care Institute to assist with lung growth. Julia underwent the fetal surgery when she was 26 weeks pregnant. “The surgery went well, and we were finally able to see that Parker had a left lung, which we were not able to see before the surgery,” says Julia.

Despite needing emergency surgeries for a twisted ovary, and for appendicitis while she was pregnant, the remainder of her pregnancy was as normal as could be expected. Julia and Parker were regularly monitored through ultrasound and Doppler heartbeat tests until her scheduled Ex Utero Intrapartum Treatment Procedure (EXIT) delivery at SSM Cardinal Glennon Children’s Medical Center on July 29, 2011.

The EXIT procedure is a special delivery performed when it is anticipated that a baby will have an immediate, critical problem once separated from the mother at delivery. The purpose of an EXIT is to provide the necessary intervention to the baby before the umbilical cord is cut, avoiding the crisis and allowing for a more stable transition from placental circulation to newborn circulation.

During an EXIT procedure, the mother is placed under general anesthesia. The delivery is started similar to a cesarean section; however, a special device is used to open the uterus and prevent uterine bleeding at the same time. The baby’s head and arms are delivered. Monitors are placed on the baby and IV access is obtained. The baby remains attached to the placenta, (with the body and legs stills in the uterus) which serves as life support, while the surgeon performs the necessary procedure to stabilize the baby.

In Parker’s case the EXIT procedure gave surgeons the chance to clear his airway, secure a breathing tube and provide adequate ventilation before the umbilical cord was cut. After the procedure, Julia was taken to see Parker in the NICU. “The moment I saw him I felt complete, and for once in my life I had done something right.

Even with the breathing tubes in him he was perfect,” recalls Julia. “Within minutes of the best moment in my life came the worst news anyone could ever want to hear, ‘There is nothing more we can do.’” After he was born, doctors found that Parker’s lungs were too weak for him to be put on ECMO, or Extracorporeal Membrane Oxygenation.

ECMO is a machine that does the work for a baby’s heart and lungs until they are strong enough to work on their own. It is often considered a last resort for the most critically ill children. “I actually got to hold my baby and see him open his little eyes and he was able to hold our fingers.

He only lived for a couple short hours but he changed our life forever,” says Julia. “Looking back, some may think, ‘I would not want her pregnancy’ but I honestly enjoyed every minute of my pregnancy. He gave me the best feeling in the world to feel every kick, pain, hiccup and even heartburn while pregnant. Seeing him open his eyes when he heard my voice made my day,” says Julia.

Despite only being here for a few hours, Parker made a profound effect on future babies facing CDH. Julia and Dustin have worked tirelessly to spread the word about CDH and raise money for CDH research. Each year they organize a special CDH Awareness Night at Busch Stadium, which has raised more than $20,000 for the St. Louis Fetal Care Institute. “Knowing that he is making a difference has given me a reason to get out of bed instead of drowning myself in sorrow," she said. “Too many babies are facing a CDH diagnosis, and we have to do something to help.”


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