My Doernbecher Story
I was 21 weeks pregnant with my daughter, Elora, when an ultrasound showed a growth on her neck. The specialist thought it was a cervical teratoma -- a rare neck tumor -- and referred me to the OHSU Dorenbecher Fetal Therapy Program.
At OHSU, I saw Dr. Brian Shaffer, who confirmed the diagnosis. Cervical teratomas are very rare. They grow fast. Because the tumor was growing on her neck, it put pressure on her airway, larynx and arteries. She could end up with a feeding tube temporarily or even permanently.
I had tests including an EKG, numerous ultrasounds and a MRI to see Elora’s tumor while she was still in utero. That was incredible. Through all of this, Cathy Crommet helped us schedule appointments and ensure it all went smoothly. Dr. Shaffer was an amazing doctor, and very upfront about Elora’s prognosis.
Dr. Shaffer and the team had planned on doing an EXIT cesarean section, where Elora would be delivered by C-section but remain attached to my placenta: She’d still get nutrients while the doctors could operate on the tumor and repair her breathing. ButI had to have an emergency C-section at 32 weeks, because I got polyhydramniosis -- I had too much amniotic fluid. The team did a fluid reduction, but Elora’s vital signs were dropping: We had to deliver her right away.
Dr. Shaffer said Elora had a limited chance of survival: The tumor on her neck was almost the size of her head. But they got an airway, and three days later, removed the tumor. Dr. Carol MacArthur performed the surgery. She did a wonderful job.
There were lots of bad things that could have happened. None of them did. She could have needed a feeding tube. She could be mentally disabled, or even dead. You won’t be able to tell that Elora had surgery when she’s older.
Elora was in the neonatal intensive care unit (NICU) for about a month and a half. Everyone there kept me so well-informed. I went in every day and the doctors always gave me a full update. They are so caring: The nurses, even on their breaks, would come in and check on Elora.
Cathy is an angel; she would call me in her off hours to see how I was doing. She always made sure Elora and I were getting everything we needed. Dr. Shaffer let me know I could call on him any time with questions or concerns.
The doctors and nurses and medical staff at Doernbecher let me make the decisions. They made sure I knew as much about Elora as they did. They all worked together so well. I can’t say enough about them. Her doctors are at Doernbecher now; she sees speech therapists, ENT, feeding clinic and primary care. At almost three months, she’s doing awesome.
You feel like you lose control when your kids go through something like this. You prepare yourself for the worst. I am still in awe, seeing Elora at home. I wasn’t expecting to be so lucky -- and I wouldn’t have been, without the care at Doernbecher.