Nora Rose Schnee
October 20th, 2016 – December 13th, 2016
Our daughter Nora Rose Schnee courageously fought a horrible disease for seven and a half beautiful weeks. This is her life story, but we hope her legacy lives on forever.
By most indications, our pregnancy with Nora was a very healthy one. We had our typical scares here and there, but nothing ever worried the doctors. Then, on October 10th at our 36-week ultrasound appointment, our lives were turned upside down.
Our little angel was diagnosed with a condition unknown to us at the time, called hydrocephalus, which caused the ventricles in Nora’s head to swell with too much cerebrospinal fluid (CSF). Without knowing the cause of this condition, we underwent a series of genetic tests as well as a fetal MRI. While the genetic tests came up negative, the MRI scan revealed a large inoperable tumor surrounding Nora’s brain stem, which also blocked the pathways for the CSF to circulate throughout the body.
Devastated by this diagnosis, we decided to get second and third opinions to ensure all experts had a chance to confirm the same. When we finally got to Children’s Hospital of Philadelphia (CHOP) we were convinced this was the best place to deliver and care for our baby.
Nora Rose Schnee was born at 9:38am on Thursday, October 20th via C-section weighing nine pounds, eleven ounces. Given her diagnosis, we feared that she may not survive transition from the womb to the real world (the brain stem controls the flow of messages between the brain and the rest of the body, and it also controls basic body functions such as breathing, swallowing, heart rate, blood pressure, consciousness, and whether one is awake or sleepy), but she had other ideas! She came out kicking and screaming like any healthy newborn, angry to be taken out of such a comfy womb! We were overcome with the emotions new parents get when their baby is born, and even more ecstatic that Nora survived that initial transition.
Not knowing how long she would survive, we had the hospital chaplain perform a baptism right there in the operating room, followed by the traditional Jewish baby naming ceremony in the recovery room shortly thereafter. We spent that first night with Nora, learning how to be parents on the job while also being amazed how well she was able to eat, breathe, sleep, and go to the bathroom!
The doctors were also amazed at how Nora was doing so they decided to take her down to the neonatal intensive care unit (NICU) the next morning to monitor her vital signs and other functions more closely. There Nora stayed, with us by her bedside, for the next ten days while nurses and doctors checked in to see how the little fighter was doing.
After many discussions with various teams of doctors and nurses we made the decision to take Nora home with us on palliative care, since we knew her time on earth was limited. In this manner she could be with her family in the comfort of a home, living out her days as peacefully as possible.
The anxiety-filled, two-hour journey home on Halloween night was filled with many questions (Will she survive the car ride? Will she be ok without the constant support the hospital provides? Will we need a nurse with us at all times in case something happens to our baby?), but we made it home safely with our loving family there to welcome us.
Once home, we discovered the joys all new parents have with their own little ones– tons of cute little noises coming out of all kinds of places, sleepless nights, triple and quadruple diaper changes, bath-time fun, and many wonderful cuddle times. While we knew our time with Nora was going to be limited, no one could predict how long she would be with us, so we knew every moment we had was precious.
As the weeks rolled on we continued to grow more and more concerned about Nora’s growing head size. By the time she was four or five weeks old, her head circumference was as large as ours, but her body was so tiny. As the CSF continued to build up, we discussed our options with the doctors. They suggested we could put a shunt in Nora’s head to relieve some of the pressure, but that such a procedure was risky for her because the tumor itself could shift during the procedure and cause more harm to the brain stem. However, they also agreed that leaving the head be as it is makes caring for her extremely difficult as well as uncomfortable for Nora. Ultimately, the decision was ours to make alone, and the doctors were onboard no matter which path we chose.
Since Nora showed no signs of slowing down and her appetite kept increasing we decided that we should pursue the shunt surgery and also take a biopsy of the tumor for further investigation. We drove back down to CHOP on December 8th, where Nora was then assessed by the doctors in preparation for surgery December 9th. They decided the morning of the surgery to delay it a few days to ensure Nora’s electrolyte levels and white blood cell count were at levels deemed appropriate for surgery.
On December 13th, 2016, after a tough night of fasting, our brave little fighter headed into surgery. We nervously waited in the family waiting room with a family OR nurse periodically providing updates, each time giving us good news. Finally, the neurosurgeon came out explaining how the surgery was a success. During this meeting, he received a phone call from the OR – Nora’s pulse had stopped. He had to run back there to see what was going on. Our hearts dropped at this moment; the seven week rollercoaster ride continued yet again.
About five minutes later, the neurosurgeon came back into the room accompanied by the anesthesiologist; we knew this was a bad sign. The anesthesiologist explained that Nora’s heart had stopped functioning on its own, possibly due to the shift in pressure in her head, allowing the tumor to take over. Devastated, we were brought into the OR and held Nora for her last moments on Earth, weeping and saying our goodbyes.
While Nora fought a brave and strong battle against such a horrible disease, ultimately the tumor took over her life. While we always knew this would be the ultimate, unfortunate outcome, we wanted to make sure her legacy lives on forever. Nora’s greater purpose in life was not just to entertain us with cute faces and noises for these seven-plus amazing weeks but to ultimately help other children who are fighting such an awful disease. That is why we are teaming up with the Swifty Foundation to set up a memorial fund under Nora’s name.
The Swifty Foundation exists to fund pediatric brain cancer research. The foundation specifically has partnered with the Children’s Hospital of Philadelphia and the Children’s Brain Tumor Tissue Consortium (CBTTC) to allow families like ours to easily donate Nora’s brain tumor tissue, allowing the teams to learn more about brain cancer.