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The Sean Philip Nicholson Story

Sean's first wave to the world was not done in the traditional way. In fact, the first time he visited outside the womb he must have seen his shadow because he went back inside for an additional five weeks. His daddy calls him a "little ground hog".

Our story started when we went in on 1/3/97 at 28 ½ weeks for what we thought would be another routine ultrasound at our hospital in Mountain View, CA. The AFP test and previous ultrasound at 17 weeks were normal so we had no reason to expect any problems. The technician first told us we were definitely having a boy. We would call him, Sean Phillip, the name we had picked out years before. We were smiling at the thought of all the 49er paraphernalia he would receive from his grandfathers. Shortly afterwards the Chief Radiologist came in and said there was something very wrong with our baby. The ultrasound showed the abdominal area to be the size of a full term 40-week baby because of a build up of fluid. They were unable to answer any of our questions. Our doctor sent us the same day to the UCSF Medical Center to have a more extensive ultrasound with the hopes of determining the root cause of the excess fluid. The news was devastating. Sean had a large cyst in his lung, which was shoving his heart over and not allowing either of his lungs to develop properly. The formal term for his very rare cyst is CCAM (Congenital Cystic Adenomatoid Malformation). Sean was going to die - most likely even before birth. We were told there was a chance we would be candidates for fetal surgery. Dr. Michael Harrison and his team at UCSF developed fetal Surgery. Fetal Surgery is used for only a few defects and is only considered if a baby would have virtually no chance at life once born. Further tests were conducted and it was determined that Sean was indeed a candidate. A quick decision had to be made as the window of opportunity for performing the surgery was almost closed. No one made us any promises but we knew we had to give our son every possible chance at life. We never wanted to ask ourselves later - what if? With the support of our families we opted for the fetal surgery, which was done that same afternoon - 1/7/97. The surgery was a success. The doctors lifted Sean out partially, removed the cyst from Sean, and put him back inside Sherry to allow for healing and further growth. Sherry remained at UCSF until Sean's birth, 2/11/97, exactly five weeks after the fetal surgery.

At birth Sean was six weeks premature and still a very sick baby. He remained under close supervision in the Intensive Care Nursery and had lots of ups and downs. He had quite a reputation among the doctors and nurses for being a lovable but difficult to figure out little stinker with an attitude.

The hardest day of our lives came 10 ½ weeks after Sean's birth when it was time to let him go. What a little warrior he was. His desire to live was incredible but the damage to his lungs just would not allow it. We knew everything humanly possible had been done to help Sean.

During our hospital stay we met many wonderful doctors, nurses, respiratory therapists, social workers, etc. who became our family. They were so kind to us and treated Sean with love and respect as if he were their own. We are eternally grateful to Dr. Harrison and the UCSF Fetal Treatment Team for giving us 10 ½ precious weeks with our son. Sean's life was truly a blessing. We believe God has a plan for each of us and good things will result from Sean's short life. Sean was the twelfth baby to have CCAM fetal surgery and we want to help the UCSF Fetal Treatment Center continue their miraculous work with birth defects. Many of the fetal surgery babies are survivors who grow into happy and healthy children thanks to the efforts of the team at UCSF.

Helping raise awareness

The Nicholsons are kind enough to put on the annual Sean Philip Nicholson Memorial Golf Tournament to help raise awareness and funds for the UCSF Fetal Treatment Center. For more information about the tournament please visit Kids ‘n’ Moms