'Somebody definitely was looking out for her': From researcher to patient
Posted November 10, 2018 6:07 p.m. EST
Updated November 10, 2018 6:55 p.m. EST
Hailey Orgass’ head felt like a dead weight. She couldn’t lift it. She couldn’t move her neck. She felt paralyzed.
A white bandage framed her face in an oval. Her long brown hair was braided into a thin ponytail on top of her head. Her right hand was wrapped in a splint. She felt a searing pain where an IV was stuck in her foot.
Orgass blinked. The fluorescent lights burned her eyes. She tried to look at the white squares on the ceiling. She clenched her eyes shut. Where was she?
“Hailey, you just had surgery,” Dr. Jennifer Moliterno said. “How are you?”
The sound pierced her ears.
“Can I hear?” Orgass asked.
“I don’t know,” Moliterno said. “Can you hear?”
Orgass was working as a postgraduate neurology research associate for Yale University. She graduated from UNC-Chapel Hill in 2017 with a degree in biology. While there, she worked as a clinical researcher in the Mother Infant Research Studies.
After graduation, Orgass knew she wanted to attend physician assistant school, but she wanted to continue clinical research first. Yale was the first school to accept her.
In August, Dr. Dylan Gee, a neuroscientist at Yale, was leading a study comparing healthy and unhealthy brains, and she asked Orgass to participate in a research brain scan as a control.
“Sometimes our labs try and help each other out because they’ll do a case-control study,” Orgass said. “Sometimes we act as the healthy controls in these studies.”
Orgass worked with stroke patients in the hospital. She probably had done nearly 100 neuro-exams that week, and she loved it. This was her calling.
Her office phone rang. It was Gee.
“Hi, is this Hailey?” Gee said.
“Yeah,” Orgass said.
“This is Dr. Gee from the study yesterday.”
“Oh, hi, how are you?”
“I just wanted to let you know, there were some incidental findings on your MRI. It’s a brain mass.”
Gee didn’t explain anything else. She suggested Orgass see a neurologist.
Orgass’s throat tightened. She felt faint. She thought of the young patients she’s worked with who were diagnosed with aggressive brain tumors and died nearly three months later.
She started screaming.
She texted her roommates. “Someone needs to get me.” She asked a co-worker to bring her stuff outside. She couldn’t go back into the hospital.
Orgass continued to yell in the car. It was a combination of crying and shouting. She knew so much about neurology, she just repeated medical terms. Her roommate couldn’t understand her.
Her eyes burned. Her throat was so tight, she could barely get words out. Her mind was a tornado.
Then, she started to reason with herself. They had the wrong person. They mixed up the scan. This wasn’t right. This couldn’t be right. She was supposed to be the healthy control.
Saturday morning, Orgass remembered she was scheduled to work the free clinic. She knew she couldn’t do it, so she emailed the director. Orgass teared up as she typed, “I was just diagnosed with a brain tumor.”
“My director emailed me back and said, ‘I’m so sorry to hear this. If we can do anything, let us know. I hope you the best with your prognosis,’” Orgass said. “When she said it like that, I realized this is so bad. I just started crying again in my bed. I was like ‘I’m dying.’”
She still hadn’t told her parents. The thought of telling them and her grandparents made her want to throw up. She couldn’t bring herself to tell them she could die.
Last January, Orgass’ aunt unexpectedly passed away and from then on, she’s felt like the glue of her family. She thought this news would break them.
“My grandma has fallen into this rut of thinking everything bad happens,” Orgass said. “She’s depressed and I understand. I just don’t want to like add this to her plate or my mom’s plate because I’ve always been the one that’s there for everyone.”
She sat on her bed. She had no idea what to do. She called her mom and was ready to tell her, but then she remembered her 16-year-old sister had a play that day.
Not wanting to distract her parents or take away from her sister’s special day, Orgass just chatted about work and the play. Orgass mentioned nothing.
The next day, Hailey called again and got her mother, Stephanie Orgass, on the phone.
“I have to talk to you,” Hailey said.
“OK. What’s up?” Stephanie Orgass asked.
“I think you need to come up here.”
Hailey couldn’t handle it. She started to cry. She mentioned the bulge pressing into her brain. She mentioned the scan. She mentioned the possibility no one wanted to address — death.
Stephanie Orgass and her husband, Paul Orgass, immediately drove two hours from Wantagh, New York, to New Haven, Connecticut. They needed a game plan.
Hailey scheduled a clinical MRI on Monday. Her friend Isabel Prado, went with her. It showed more than the research scan and the doctors determined the mass, which appeared to be the size of a golf ball, was benign. It was an epidermoid cyst.
But she still needed surgery. The mass was growing.
It was close to her two cranial nerves, which control hearing and facial motor. If the tumor compressed the nerves, Hailey could lose her hearing or facial motor.
She saw Moliterno, the head surgeon, Wednesday. And the surgery was scheduled two weeks later for Sept. 6.
“I felt like I had to be strong for her,” Stephanie Orgass said. “It was so much for her to go through that I didn’t want her to see me be upset. I would break down when I was not around her.”
Before she had even met her patient, Moliterno had received texts, emails and phone calls from Hailey’s friends and coworkers at Yale asking that she take good care of Orgass.
When the surgeon finally met Hailey and her family, she said, “So you’re Hailey Orgass? It’s like I’m working on somebody famous.”
Although Hailey’s tumor was benign, Moliterno said it was still life threatening
“The area where hers occurred was a tricky area because a lot of important arteries and nerves were associated with it,” she said. “Of course, it was up against her brainstem, which is quite important to just being able to live.”
Moliterno said if Hailey did not find the mass when she did, it would have continued to grow and could have caused serious damage to her brain.
Three days before the surgery, Hailey wanted to do her favorite activity. Sailing. It reminded her of growing up on the beach in Long Island and being with family.
Hailey wasn’t confident the outcome would be positive. She was having nightmares.
She dreamed she woke up from the surgery and couldn’t hear. She dreamed she woke up from the surgery dependent on the breathing tube. She dreamed she woke up and wasn’t the same person.
Hailey had danced since she was young. She had been paragliding in Switzerland. She had made a habit to go on daily walks in the East Rock Park. She didn’t know if this would be her last time sailing or dancing or paragliding or walking. So, she went on her boat. It was a perfect day to be on the water.
But it wouldn’t end up perfect.
Hailey and her brother, Colin, were responsible for throwing the anchor down. They gripped the rope and it started to slip. She knew better, but Hailey twisted the rope around her hand. When the anchor hit the bottom, her middle finger snapped back at almost a 90-degree angle.
For the second time in two weeks, she felt the urge to vomit. She blacked out.
“That’s definitely broken,” the urgent care doctor said.
After she spent all of Tuesday in the emergency room, the doctors decided Hailey didn’t need immediate surgery on her hand. She would just need to see a hand specialist after her brain surgery.
“That really broke me,” Hailey said. “I was fine leading up to the surgery and then having a broken hand, it’s another stressor. Recovering from brain surgery is one thing, but it’s one thing recovering from brain surgery with one arm. I was like, ‘How am I supposed to do that?’”
Hailey had plans for her recovery. She wanted to learn how to crochet. She couldn’t crochet with one hand. She wanted to read books she never had time to read. She couldn’t turn pages with one hand.
Recovery would be more difficult now.
Hailey walked into the operating room on Thursday. It was 5:30 a.m. She was the first patient of the day. She had never seen an OR like this one. It looked like it came out of a movie
Four flat-screen TV’s covered the wall. Her brain scan was plastered on one screen. Hailey stared at the bulge. She still couldn’t believe she never felt it. She was ready for it to be gone.
Hailey recognized the team of about 20 medical personnel. She had worked with them every day. She felt safe.
The team circled her. Moliterno stroked her hand and rubbed her head.
“You’re going to be OK,” Moliterno said.
“I know,” Hailey said.
The anesthesiologist gave her oxygen. The team went around the circle, introducing themselves and their titles to Hailey.
When they finished, they began to get ready.
“Wait,” Hailey Orgass said. “I don’t get to introduce myself?”
“All right Hailey, please introduce yourself to the group,” Moliterno said.
“OK. You’re going to go to sleep now. See you when you wake up.”
Stephanie Orgass squeezed the pager in her hand. It had been three hours. She sat with her husband in a tight room. They didn’t say a word to each other. Their faces said it all. Where was their daughter?
The pager notified them that the surgery had ended, but that’s all it said. Paul Orgass didn’t know if his daughter could hear or if she had the same personality or if she lost her memories.
“I’m just thinking the worst because I wasn’t really expecting to the buzzer to go off for at least four to four-and-a-half hours,” Paul Orgass said. “We’re waiting and waiting and waiting and I’m freaking out. I’m really freaking out.”
A nurse noticed Paul Orgass pacing and she entered the room. “If it was an emergency, believe me, the doctor would be here as soon as possible.”
Paul Orgass took a breath.
After about 30 minutes, Moliterno entered the room. She said the surgery went well. Hailey was in the intensive care unit, and she was allowed to have visitors. Stephanie Orgass nearly ran to the room.
The ICU was pitch black. The blinds were shut. Hailey lay huddled on the bed. Her small frame was covered in thick blankets. Her olive skin appeared cold. Her head was covered in a white bandage. She was motionless.
“Hailey?” Stephanie Orgass said.
Hailey winced at the noise. Paul and Stephanie Orgass started walking toward their daughter.
“No,” she said. “Don’t touch me.”
They felt a wave of relief. She was OK. Stephanie Orgass wanted to crawl into the bed and hug her daughter. But she just watched her, hoping the bulge was gone forever.
“When we first saw Hailey, it was heartbreaking,” Paul Orgass said. “That’s when it really hit me that they drilled into her head. She was in a lot of pain. Seeing her like that, that definitely made me very upset.”
Hailey was discharged from the hospital two days later. The tumor was deeper than expected. It was closer to her brain stem, so she could have lost her motor skills.
Moliterno accessed the mass through a cut behind Hailey’s right ear. From there, part of her skull was removed and later replaced with medical cement. The mass was gone. Her nerves were fine. Her hearing, facial motor and motor skills were not obstructed.
She has about a two-and-a-half inch scar behind her left ear. The doctors only shaved a patch of hair. It’s already grown back.
The sensation on the right side of her head has decreased.
“You know if you knock on a helmet, that’s how it feels,” she said. “Unfortunately, because they cut the nerves in the skin right here, that was going to be a side effect.”
Hailey saw a hand specialist two weeks after the surgery. She was told her hand would heal on its own. But it made recovery more difficult than Hailey hoped.
Stephanie Orgass stayed in her daughter’s New Haven apartment for nearly two weeks. She helped Hailey Orgass stand up, get dressed, wash and brush her hair, open jars and cook meals.
The sound of ice clinking out of the fridge pierced her ears. She couldn’t walk more than 500 feet without feeling exhausted. It was routine for her to take multiple two hour naps a day. She couldn’t even open her pill bottles.
“I was just sad that this happened and stressed that I was relying on my mom for everything,” Hailey said. “Think about it, when was the last time you were like that? Like when you were 5. I mean for everything. It’s a lot.”
There’s a chance the tumor can grow back, but it’s not a constant worry for Hailey.
In hindsight, she said she had symptoms. She had painful headaches almost every day, but she blamed the aches on lack of sleep or too much coffee. She never thought there was a tumor in her head.
Hailey has a follow-up appointment in December. She said she hopes to hear good news.
“If I go back in December and they’re like, ‘You need another surgery,’ I’d be pretty bummed,” she said. “It would just feel like a battle I never win. But if I survived like the first surgery and I’m thriving, then I think I can do a second.”
Hailey still has to take naps throughout her day. She’s been going to the gym to gain her strength back. She was proud when she ran a mile. She hasn’t gone sailing since the accident, but she’s content with knowing it’s a possibility.
“It’s funny with all the Power Balls and the Mega (Millions), around the office, they were like, ‘What would you do if you hit the Ball?’” Paul Orgass said. “I said ‘Listen I already hit my lotto, man.’ I did because my daughter was safe.
“It’s a miracle. That’s how I looked at it. Somebody definitely was looking out for her. Everything was lined up for this to happen. She was in the right place at the right time.”