Advanced Fetal Care Center (AFCC)
Susan, Ray & Loren
As is common with a first pregnancy, Susan Davis was experiencing excitement and anticipation when she had an ultrasound test at the University of Connecticut Health Center in Farmington, CT, 18 weeks into her pregnancy. But by the end of her visit, Susan learned her pregnancy was anything but routine. There was a problem, her obstetrician told her. Then, he simply shook his head and recommended terminating the pregnancy. Counselors were available to help with the process, the Davises were told.
But Susan and her husband, Ray, are not ones to give up easily. According to Ray, the Davises asked for some time alone to absorb the news and talk. After 15 minutes they left, telling health center staff they decided to continue the pregnancy, despite the odds, and were seeking a second opinion.
From the Internet, Susan learned more about the baby's diagnosis - congenital cystic adenomatoid malformation (CCAM), an abnormal growth of lung tissue that prevents the normal growth of the heart and lungs. She sent a few inquiring e-mail messages, and within three days, on July 16, 2001, the Davises were sitting in the office of Luanne Nemes, RN, MS, PNP, the nurse practitioner who is a family's first point of contact at the Advanced Fetal Care Center at Boston Children's Hospital.
"Luanne urged us to relax and get ready to deal with whatever was ahead. She said we needed to do some tests, determine the size of the growth, and understand what we were facing," says Susan. "We knew immediately we were in the right place."
After their initial meeting with Luanne, the Davises went to the Radiology Department for ultrasound and magnetic resonance imaging (MRI) diagnostic procedures. They met with the Co-directors of Fetal Imaging, Carol Barnewolt, M.D. and Judy Estroff, M.D., who are AFCC pediatric radiologists specializing in high-risk fetal sonography and fetal MRI. The physicians carefully examined the imaging results and discussed their interpretations with Russell Jennings, M.D., AFCC Director and general fetal surgeon.
With test results in hand and input from the radiologists, a meeting of the Davises, Dr. Jennings and Luanne was the last activity in a long day. "Dr. Jennings told us the CCAM was big," recalls Susan. "He said there were no guarantees, but knowing we weren't willing to end the pregnancy, he told us his team would do whatever was possible." Adds Ray, "We were ready for anything by this time."
The Davises say they appreciated the up-front, but positive style of the AFCC team. "I remember three things that Dr. Jennings told us to keep in mind: that there was nothing we could have done to prevent this, that we couldn't change it, and that there was no easy fix," says Susan. "That helped keep us calm and focused."
According to Ray, they had to have a lot of faith and prayer through the process. "The people at Children's, Dr. 'Barny,' Dr. Jennings and Luanne and all the rest of the staff were great and very helpful," he says."It was not until the end that it all started really sinking in about the problems. I can recall Sue asking me what would I do if he was not born normal or had a disability. I told her that we had made this child. If it was a boy or a girl, and had any kind of disabilities, it was my child and I would do whatever it took to raise this baby. There were the thoughts about what happens if he dies at birth. I thought that if it was God's will, then let it be. It was still hard to deal with. It was a long road and the 30 weeks came and went. It was one emotional roller coaster ride that I will never forget."
Another source of strength was the family members, friends, neighbors and church members who supported the family with offers of help and prayers, say the Davises. Both sets of grandparents lent a helping hand, along with Ray's seven siblings and their families.
The sense of calm prevailed through the weeks of pregnancy as Susan had ultrasound images taken every two weeks in Connecticut with visits to Children's Hospital on alternating weeks. The tests monitored the possible development of hydrops, a condition in which compression of the blood vessels causes the heart to pump harder to circulate the blood, leading to heart failure. Each time the ultrasound images showed that the condition had not developed, Susan and Ray had their own "hydrops celebrations" to mark the progression of the pregnancy.
When they reached the 30th week of pregnancy, an important developmental stage, the Davises were able to breathe easier. Although reaching that milestone was good news, the CCAM was still sizable. At the 30th week, up to 20 percent of CCAMs shrink on their own as the fetus develops. An MRI at Boston Children's Hospital showed that was not the case with the Davis baby, so plans were made to operate on the baby as it was delivered.
Getting ready for baby Davis
The procedure planned for the Davis baby is called EXIT to ECMO. The process would begin at Brigham and Women's Hospital with a procedure called ex utero intrapartum treatment (EXIT). The baby would be delivered partially through Cesarean section, and the umbilical cord would be left attached as clinicians stabilized the baby and readied him for the next step. Then the baby would be connected to extracorporeal membranous oxygenation (ECMO), a heart and lung bypass system that would circulate oxygenated blood throughout the body. ECMO would essentially act as the baby's heart and lungs until the team could surgically remove the abnormal lung growth. Once ECMO was functioning, the umbilical cord would be cut, and the baby would be transported to Boston Children's Hospital.
For the Davis baby, radiologists had determined that the CCAM consisted of both solid tissue and cysts (fluid-filled sacs). They also identified a sequestration, an abnormal connection to a main heart vessel that was feeding the growth. And, finally, images revealed that the Davis baby's umbilical cord had begun to thin, raising concerns of the cords ability to sustain the baby for any period of time.
Knowing all these facts enabled clinicians, and the family, to best prepare for the upcoming birth. All were as ready as they could be, and the C-section was scheduled for November 28.
Of course, little Loren Davis had other plans. Susan went into labor on November 16, 2001. The Davises immediately drove up to Boston from Manchester, CT, and Susan went to the delivery room.
"As I sat there waiting in the hospital room, it was the longest 1 1/2 hours of my life," says Ray. "I thought of everything from my childhood up to this day, and then all the 'what ifs.' It was one more roller coaster ride that I did not expect."
At 2:45 p.m., a nurse came for Ray. "As I looked at her, she was expressionless no smile and a straight tone in her voice," he says. "I walked out of the room and my whole life was in slow motion. I did not know what to do except follow her. I thought I lost my child or my wife."
Ray remembers as he went into the hallway, the nurse turned to him and said, "are you going to bring your camera?" He said, "what?" She said, "get your camera, you have a baby boy." He yelled, "YES!" and ran with her down the hallway after retrieving his camera.
The nurse told Ray to stop and wait in one spot of the hallway by the elevator. "She said I had one minute to see my newborn son, Loren," he recalls. "I saw the surgeons and staff coming down the hall with two big carts on wheels. Here was my son on one, and all the support equipment on the other. I leaned over him and kissed him on the right side of his cheek and took one photo of him. Then he was on his way to surgery."
At 36 weeks, the baby was almost a month early. Loren was quickly weighed at birth, tipping the scales at less than five pounds. All went as planned - Loren was placed on ECMO, then rushed to Boston Children's Hospital for surgery to remove the CCAM and repair the sequestration, while Susan recovered at Brigham and Women's.
"It was a long night - no sleep and wondering how Loren was doing. The doctors and nurses came in every 1/2 hour to give us an update on Loren's status. The next morning I got to see him for an hour before I had to go home for the day," says Ray. "It was hard seeing him with all the machines, but I knew in the long run it was only way to help him get better. I looked over him and gave him a kiss goodbye for the day. I said a prayer and thanked God for all he had done for our son Loren, and thought of all the pain my wife experienced throughout the pregnancy. It was the happiest day of my life. It was having the faith in God and prayer that helped us through the hardest times when we did not know what to expect."
Ray stayed at his son's side as much as possible and was joined by Susan after two days. "I don't know that you can ever be prepared to see your baby in this situation," says Susan. "But I could tell that the nurses and other staff in the Multidisciplinary Intensive Care Unit knew exactly what they were doing. They had so much experience with sick children."
Loren remained on ECMO for three days to allow his heart and lungs to develop. He gradually improved during his five days in the Multidisciplinary Intensive Care Unit. Throughout the rest of Loren's three-week stay at the hospital, Susan and Ray took turns staying with him, reading to him and playing music. Friends, family members, and a priest and a nun from the hospital chaplaincy were frequent visitors.
Susan and Ray recall Thanksgiving Day when they came home for a much-needed break. Neighbors who had seen them pull into the driveway called and insisted that the Davises come to their home for Thanksgiving dinner and wouldn't take "no" for an answer. "I remember sitting there tasting that really good home-made food and being barely able to carry on a casual conversation," Susan laughs. "I had gotten so used to the hospital food and the routine there."
By the time Loren Davis was able to go home on December 7, the breathing and feeding tubes were long gone. Well into 2002, Loren was thriving with very few problems. He is planning to see Dr. Jennings on his first birthday and a Children's cardiologist on his third birthday to determine if there are any long-term concerns about his heart and vessels.
Life is relatively back to normal for Ray, who manages an automobile collision repair center. And although Susan is no longer working as a branch sales manager for a digital duplication company, she knows she has certainly helped to educate her co-workers about fetal health and Boston Children's Hospital.
Loren is growing into a normal, rambunctious toddler. "Loren is a fighter. He's determined, but he's happy. I sometimes wonder if he finds strength by drawing on his earliest experiences," his mother says.