UCSF Children's Hospital

In August of 1995, when my wife, Elizabeth was five months pregnant, we got a call from her obstetrician. He told us that Elizabeth's alpha-feta protein blood test was abnormal, with an elevated level that could indicate Down's Syndrome. We scheduled an ultrasound that week and an amniocentesis. During the scan, the ultrasound technician discovered a mass at the base of the baby's tailbone so we were referred to a perinatologist in Las Vegas. The mass was diagnosed as a sacrococcygeal teratoma (SCT), a condition found in one in 40,000 babies.

A SCT is a tumor at the tailbone, or coccyx. Some are small and cause no problems; others can grow larger than the baby, be malignant or spread to other parts of the body.

In the following months, we made frequent visits to the perinatologist for fetal assessments. In mid-November, my wife became very uncomfortable as a result of polyhydramnios, or an excess of amniotic fluid. We were told that the location of the umbilical artery was not normal, that our baby was stressed, and she was not swallowing fluid normally. Over the next month, our baby's condition worsened and two liters of amniotic fluid were drained by amniocentesis by doctors in Las Vegas. My wife was prescribed strict bed rest and upon her next visit to the doctors, two more liters were tapped and drained.

It was 2-1/2 months before our baby's due date and the doctors told us to prepare for the worst, that our baby might die prior to her delivery. At this point, our emotions were high and our hearts were torn. While driving home with my wife, we were both upset and I said to her, "Elizabeth, we're going to lose this baby."

Three days later, on Dec. 10, my wife started contractions and had to be taken to the hospital. The preterm labor was stopped with a shot of terbutaline and an ultrasound was scheduled for the following morning. We returned home and I decided to call Dr. Michael Harrison at the UCSF Fetal Treatment Center for a second opinion. He had been referred to us by both of our doctors and a personal friend. I spoke with Dr. Harrison and he asked me to send a copy of the ultrasound tape that Elizabeth was going to have later that day via overnight delivery.

I explained all of this to Elizabeth and my family and we went for Elizabeth's ultrasound. During the ultrasound, the technician found the SCT had grown to a size of 15 by 11.5 by 8 centimeters and the baby showed signs of hydrops, or heart failure. My father volunteered to fly the tape to the UCSF Fetal Treatment Center immediately, but our doctors recommended we fly Elizabeth to San Francisco instead.

I called UCSF to inform them of the results of Elizabeth's ultrasound. I spoke with Jody Farrell, the fetal nurse coordinator, and she told me they would be waiting for us. In a matter of minutes, Elizabeth and I emotionally made the decision to fly to UCSF. We were fortunate that my father was able to charter a Lear jet through a business associate and we landed in San Francisco by 3 p.m. that day.

At UCSF Medical Center, a team of doctors from the Fetal Treatment Center met us. Elizabeth had another ultrasound performed by radiologist Dr. Ruth Goldstein, who confirmed our worst fears. Our daughter had SCT and her heart was enlarged and beating sluggishly, or showing signs of failure. Dr. Sam Hawgood, the neonatologist; Dr. Tom Musci, the perinatologist; and Dr. Harrison, the pediatric surgeon, were all present with us during the scan.

There was much discussion about how to proceed. It was decided that Elizabeth should deliver that night via C-section and we were told there was a high probability that our baby would die of heart failure prior to or shortly after birth.

Dr. Musci had delivered several babies with SCTs and he did a beautiful job delivering our baby girl. Our little girl, born two months early, was immediately taken to the Intensive Care Nursery and my wife was wheeled to the recovery room. My daughter was very sick that first night and Dr. Hawgood, the neonatologist, stayed with her all night. The next morning, I left my daughter and Dr. Hawgood at 3 a.m. When I returned at 5:30 a.m., he was still there caring for her.

Throughout that day, I consulted with Dr. Harrison. My daughter was born with the SCT and a surgery still had to be performed to remove the mass. Dr. Harrison explained that we needed my daughter to stabilize a little more before surgery could be performed and that it was still a very tenuous prognosis. The SCT was so large and had such a large blood volume it was causing my daughter's heart to be overworked and she was showing signs of heart failure. Also, the red blood cells were breaking down, causing her potassium levels to rise and her platelet levels to fall.

That evening, Dr. Harrison successfully performed the first of three surgeries on my little girl. He removed the four-pound, five-ounce SCT. The surgeries took place over a six-week period and my little girl bravely survived each day, slowly gaining weight and strength. The first surgery was removal of the SCT, the second was a liver biopsy to ensure there was no liver tumor, a complication of SCTs, and the third was a "clean up" procedure of her coccyx.

By Jan. 1, 1996, all of Sally's surgeries had been completed and we were anxious to take her home but she was still a sick little girl and required the expert care of the UCSF Intensive Care Nursery staff. She needed to gain weight so she could maintain her temperature outside the incubator and be able to breast feed for all of her feedings. By Feb. 7, 1996, we were on a plane back to our home in Las Vegas with our beautiful little girl, Sally Elizabeth Stunkel.

My wife and I will never forget the time that we spent in San Francisco. All of the doctors and staff were heroic and deserve tremendous credit. The best words to describe Dr. Harrison, Dr. Hawgood and Dr. Musci are the following: confident, dedicated, knowledgeable, skilled, sincere, optimistic, stable and kind. They are the kind of guys you just want to give a hug. And when I left I did just that.

Finally, when I think of our time in San Francisco and of all of the wonderful people who helped us along the way, my thoughts are always drawn to the true star who beat all the odds, my daughter.