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Shortly after midnight on June 15, 2007, Sofia Delaney was delivered by caesarian section at O’ Connor Hospital in San Jose, California. Sofia’s parents, Christian and George, anxiously waited to hear her cry but there was only silence. The birth triggered a “Code Blue” in the hospital, alerting staff to an immediate life-threatening emergency. Sofia was not breathing, but no one could figure out why. She was resuscitated and spent the next two days on a ventilator in the hospital’s Neonatal Intensive Care Unit (NICU).
Two days after her birth, doctors recommended that Sofia be transferred to Santa Clara Valley Medical Center (SCVMC). Christian and George were initially skeptical. “I didn’t understand why [they] were shipping us off to the county hospital, and why we weren’t going to Stanford if there was something seriously wrong,” explains Christian. After being assured that the NICU at SCVMC was one of the best in the area, they agreed to the transfer. The Delaneys now describe this as the best decision they made.
Christian and George quickly found SCVMC staff both knowledgeable and compassionate. By the end of Sofia’s first day at Valley Medical Center, one of the neonatologists mentioned to George that there was a possibility that his daughter had a very rare condition called Congenital Central Hypoventilation Syndrome (CCHS). Patients with CCHS have trouble breathing on their own, especially while sleeping and frequently suffer from a variety of associated conditions. CCHS is so rare that there are only 300 recorded cases in the world and is often misdiagnosed or not diagnosed at all. Even though most of the doctors at Valley Medical Center had never encountered the condition before, they recognized it almost immediately. In under a week, doctors at SCVMC had ruled out every other possibility and overnighted a blood sample to the only lab in the country that performs genetic testing for CCHS. Sofia was quickly diagnosed with CCHS.
While there is no cure for CCHS, doctors at Valley Medical Center set out to craft a treatment plan for Sofia that would help her become stable enough to go home. They contacted specialists and researchers as far away as Italy in order to formulate the best possible plan. Christian and George had many questions and concerns along the way. They recall that doctors were always willing to answer their questions and consistently made an effort to include them in the decision making process. “I never felt like anyone was talking down to us … I felt very much like we were all part of a team working towards what was best for Sofia,” says Christian.
Sofia spent a total of four months at SCVMC and through it all, it was the hospital staff – from doctors to social workers to the receptionist at the front desk – that made their stay bearable. “Everyone was so kind, from the head neonatologist to the janitor,” she adds. One very special group of people made a particularly strong impression on the Delaneys. “The nurses . . . they are just phenomenal. They just took us in and really honestly became like family in the end,” explains Christian, who still sends many of the NICU nurses pictures and email updates. “We came out of this confident that this not at all what we would want, but we can manage this, in large part as result of the positive support of everyone there,” says Christian.
Thanks to Sofia’s record diagnosis and exceptional care, she became healthy enough to go home in a relatively short time given her condition. When asked what they would share with other parents about their experience with Valley Medical Center’s NICU, the Delaneys have only positive things to say. “They have someone there 24/7 which is hugely important when you have a child that’s critically ill,” says Christian. “Know that your child is in good hands and is going to be safe in those hours that you can’t be there,” she adds.
Today Sofia is making steady progress. Her parents describe her as “the happiest child [they] have ever met.” She still needs ventilation and will undergo at least four more major surgeries to address complications associated with her CCHS. George and Christian believe strongly that SCVMC has given Sofia the best shot at a happy life. “I already have plans for her. She’s going to get by all this, and we’re going to let her learn how swim and anything else she wants. Ultimately, she’ll be fine,” says George. These days when “Baby Girl Delaney” visits Valley Medical Center doctors and nurses come rushing out of their rooms, not because there is a “Code Blue” patient, but because there is a very special visitor.