A Mother’s Strength to Survive the Odds
By Julie Schoonmaker
Forward by Ryan Vincent
Tuesday, January 19, 2016 3:39 PM
Before reading further I would suggest you find a safe place to sit.
On Sunday Rebecca suffered a very significant and severe bleeding in her brain. We happened to be on our baby moon in Carmel, CA when this happened. Fortunately, this resulted in a nearby transfer to Stanford Medical Center where she has had access to the best facilities and talent one could ask for. This is where we remain today, and the foreseeable future.
To provide a brief update, over the last 24 hours she has received multiple cat scans to monitor the size and magnitude of the bleeding, an angiogram to validate the source of the bleeding, and brain surgery to extract the fluid and repair the source. The size of the bleeding measured 9cm x 6cm, from which about the size of a baseball needed to be cut from her skull to extract the blood and fluids and repair.
During this time the bleeding has significantly impacted her vision, speech, and use of the right side of her body. At the moment, she is showing little to none of each. Memory may be impacted as well. She has been an incredible soldier to have persevered through this long, stressful, painful, and uncertain process. We remain optimistic that she will, with time and patience, regain these functions which we are all so fortunate to perform each and every day. I am so fortunate to have such a relentlessly strong wife and mother to a beautiful son Dean and one more to come. Rebecca has endured this entire process while still bringing along our second baby in her womb (30 weeks). The lone bright spot here is that the baby within is doing just fine.
We ask that your thoughts and prayers be with her as she enters a long recovery phase.
At the moment we don’t have any plans and taking it one day at a time. She remains in ICU where she remains under neurosurgery’s and OB’s constant surveillance. Dean is under the care of my parents. Please understand that responses may be delayed.
Much love to all.
Two days earlier
“Good morning beautiful,” Ryan said to Rebecca. “And good morning to you,” he said resting his hand on her pregnant belly.
“Good morning,” Rebecca smiled.
They both lazily rested in bed, neither in a rush to get out of bed since relaxing on their baby moon was the top priority. With a one-year-old and dog at home in San Diego, Rebecca was used to operating on a schedule. It felt nice to do nothing for a change. She had been looking forward to her last time alone with her husband on their getaway to Carmel. A last chance to get away before baby number two arrived and life really got crazy. A day browsing through antique shops, visiting boutiques and taking a scenic drive into Monterey for dinner sounded perfect.
“I guess we should get up. We’re not going to get a vacation like this for a while,” Rebecca joked.
As Rebecca sat on the hotel room floor in front of the mirror to do her makeup, she frowned, realizing she had a little headache. It wasn’t uncommon, so she popped a couple Tylenol hoping she’d feel better quickly so she could start enjoying the day with Ryan.
Within a couple minutes, her headache felt far worse. Rebecca went to the bed to lie down and told Ryan what was going on.
“I’m in so much pain. My head went from a mild headache too extreme pain in a matter of minutes,” Rebecca described.
Ryan tried to call Rebecca’s doctor to find out what to do. But it was the Sunday of Martin Luther King Junior weekend and he wasn’t getting through quickly. As he waited on the phone, Rebecca grew hysterical as the pain intensified.
“It’s getting worse and worse,” Rebecca sobbed. “Something is really wrong Ryan. Something is really wrong.”
Ryan hung up the phone and told Rebecca he’d go get the car to drive her to the hospital. Rebecca tried to get up to follow him, but realized in horror that she couldn’t move her body to walk to the door. Ryan immediately called 9-1-1.
When the EMTs arrived, Rebecca was writhing in pain as they asked a series of questions trying to evaluate her and pinpoint the root of the problem. They loaded Rebecca into the ambulance and she drifted off. She woke up a short time later in the hospital and in a split-second she saw a team of about a dozen doctors and nurses running around her. Her head was strapped down to the gurney. They were cutting off her clothes. She couldn’t speak. She couldn’t move. She slipped out of consciousness.
Two days later, Rebecca’s eyes fluttered open. Ryan’s face was peering down out her anxiously. She saw him wave his arm. Within an instant, Rebecca’s dad Jeff and stepmom Carolyn were standing by Rebecca’s other side. Rebecca tried to speak, but she couldn’t get any words out. She started sputtering. With the realization that she couldn’t talk, tears welled up in her eyes.
“Rebecca, you don’t now how good it is to see you awake,” Ryan said. Rebecca noted her husband’s typically calm, care-free face was full of concern.
She tried to reach up for his hand, but couldn’t move her right arm. As if sensing her attempt, Ryan instantly reached down and took her hand. Rebecca stared back at him in panic. She could see his hand grasping hers, but she couldn’t feel anything. She heard a beeping noise. She followed the sound and saw her arm was connected to an IV.
“What was happening?” Rebecca helplessly wondered.
Rebecca looked up and locked eyes with her stepmom Carolyn, who was a nurse, and tears of confusion stung her eyes again. Carolyn stroked Rebecca’s left arm, which she noticed she could feel. Carolyn calmly started to fill her in on what was happening.
“Becks, you’ve been so brave. You’re in Sanford hospital, which luckily is one of the best places in the world that you could be for treating an extremely rare brain rupture you suffered called an arteriovenous malformation (AVM). It affects less than one percent of the population. It caused a lot of bleeding in your brain which is not a good thing. You went in for surgery and doctors had to stop the bleeding and remove the abnormal vessels,” Rebecca tried to process what Carolyn was saying but found it all overwhelming.
“I know it’s scary sweetheart. Right now, you can’t move the right side of your body, your vision is impacted to some extent and I see it’s very difficult for you to talk. But doctors say you’re young and otherwise very healthy. They’re confident that you will get better with time and rehab.”
“The fact you survived is incredible Becks,” her dad chimed in an unusually soft tone. “You’re a true fighter. We couldn’t be more grateful to have you here.”
Rebecca had a million questions running through her head.
“How much time would it take to get better? When would she be able to speak normally? What about reading to Dean? And would she even be able to hold her new baby?” Rebecca wondered as tears welled up again in her eyes. Suddenly she panicked as she tried to look down towards her stomach. “The baby. How’s the baby?”
While she still couldn’t speak, Ryan and her parents seemed to know exactly what she was thinking. Right on cue her dad said, “There is some good news. The baby is doing very well.”
“Boy or girl, we’re calling this baby ‘Champy,’” declared Carolyn.
Rebecca breathed a sigh of relief.
“I know it’s a lot to take in,” Ryan whispered reading Rebecca’s mind. “You’ve been through way too much. Just relax for now. We have a long road ahead but we’ll tackle it together. It’s going to be okay.”
It was too much to take in. Rebecca hoped with all her heart that her husband was right. That bit of hope was all she had to hang onto. Rebecca drifted off to sleep.
For every step forward Rebecca took over the next two months leading up to her baby’s due date, it seemed she was pulled two steps back.
A few days after brain surgery, she regained some sight and the ability to understand and speak minimally. Rebecca was able to tell doctors her son’s name, ‘Dean,’ and also recalled his age, ‘a year-and-a-half.’
The early nights in the hospital brought excruciating headaches that caused Rebecca to cry out in writhing pain. On top of that, the 50 staples from surgery across the rear and left side of her head felt like claws digging into her scalp. Even more painful was when nurses went to individually remove each one. Rebecca’s hair had been shaved from that area, yet each staple removal felt like hot wax was being ripped out of her scalp. The process was so tortuous for Rebecca, it took the nurse two days to complete the extraction. Their removal brought Rebecca much comfort and relief.
About two weeks after surgery, a medically equipped jet flew Rebecca out of the Bay Area and back home to San Diego. She began a rigorous rehabilitation program at Palomar Medical Center’s OB unit in Escondido. Day after day, she poured all her energy into working with physical therapists in hopes of ultimately going home and caring for her baby after ‘Champy’s’ arrival with minimal supervision.
As Rebecca’s ability to speak began to return, it became clear the loss of blood in her brain impacted her short term memory. She constantly felt scared, confused and frustrated. While family, friends and doctors explained what she had endured, Rebecca lacked the ability to process what was happening.
Still, her strong desire to go home and be a mom to her growing family kept Rebecca pushing forward. Thinking about why this horrific thing happened to her was too depressing and did not help her heal physically or mentally. Rebecca told Ryan that as long as she was in rehab, she only wanted to concentrate on looking toward their future.
As feeling slowly began slowly returning to Rebecca’s right hand and arm, she was able to raise it parallel to the ground. Therapists helped Rebecca use this ability to her advantage and prepare for her baby’s arrival by practicing holding a bottle and changing diapers. Tasks that took mere seconds to complete with her son Dean now took every ounce of energy to muster through. It was challenging re-training her brain to communicate with her body parts, but Rebecca was slowly getting stronger.
Then Valentine’s Day arrived. To celebrate, Rebecca underwent her second craniotomy.
Rebecca had been rushed back to the hospital when she spiked a high fever. An MRI of her brain revealed a significant abscess spanning the area of her first procedure. The infection resided both between skull and skin, and just inside the skull. During the second brain surgery, doctors removed all the fluid to eliminate the infection.
The procedure went well and by the time Rebecca’s 33rd birthday arrived towards the end of February, she was back in rehab with very little regression. The OB team monitoring ‘Champy’ said the baby was growing wonderfully and set March 14tht as the caesarian delivery date. With a looming due date before her newborn entered the world, Rebecca began joking with friends that she had a little less than a month to continue putting Humpty Dumpty back together again.
Six Months Later
“Mama, mama,” Dean called out.
It was seven in the morning on a Saturday but that never seems to matter to a two year, Rebecca thought as she walked slowly down the hallway to his room and opened the door. Despite the early hour, she couldn’t help but smile when she stepped inside. The morning sun was pouring through his window curtains, lighting up Dean’s face as he held out his arms for a hug.
“Good morning Dean,” Rebecca said returning his hug and pulling him close.
Just then, she heard Grant begin to cry in the room next door.
“Do you want to go say good morning to your baby brother?” Rebecca asked Dean, watching his face light up with excitement.
“Brother, brother,” shouted Dean as he ran into Grant’s room causing his little brother to squeal in delight.
“And good morning to you!” Rebecca said as she carefully bent over to lift him up out of his crib. Grant smiled and Rebecca noticed another tooth coming in. She couldn’t believe he was six-months-old already. “You’re growing way to quickly on me! Don’t start looking at colleges quite yet, okay?”
As Rebecca slowly changed Grant’s diaper, she could hear Ryan getting breakfast started downstairs. Realizing dad was up too, Dean took off toward the kitchen. Rebecca set Grant down, slipped on a baby carrier, snuggly fit Grant inside and cautiously started making her way down the long flight of stairs to join them. She wasn’t comfortable carrying Grant up and down the stairs yet. She worried about missing a step with him in her arms and didn’t want to risk hurting him in any way, so the baby carrier was the hands-free alternative she’d come up with to maneuver between the first and second stories of her house.
When Rebecca stopped to think about it, she was the first to admit, she had come a long way since coming home from the hospital. Rebecca was so relieved when her second son Grant James arrived happy and healthy on March 14th. After a two month stay in the hospital and the rehabilitation center, Rebecca couldn’t have been happier when doctors sent her home with Grant just several days after his arrival.
Finally, Rebecca felt like she could begin living her life again. Her boys were the motivation she needed to stay strong as her recovery continued. When they arrived home, Rebecca made it her mission to keep up with Grant. If he needed a bottle, she made him one. If he rolled over, she wanted to be right there with him. Rebecca moved slowly at first, but she got the job done. Between diaper changes and naptimes, a rotating team of speech, occupational and physical therapists came to her house. Doctors told Rebecca her greatest recovery period would be within the first year after her surgery and Rebecca was determined to make the most progress as possible in that time frame.
It wasn’t easy. At first, Rebecca could only walk a few steps with a walker before she needed to sit down. While raising two kids under two, Rebecca took her own baby steps progressing as she walked to her front door, then out the driveway, down the block and finally up the stairs. At first all her physical activity had to be performed while wearing an uncomfortable helmet. After Rebecca’s second surgery to remove the infection, doctors also had to remove the bone flap protecting her her brain leaving no hard skull in an area about the size of a softball. Within several months of coming home, Rebecca underwent a third surgery to replace the removed bone flap with an artificial plastic plate.
More physical and mental strides came after surgery when she was finally able to ditch the helmet. Rebecca progressed from a walker to using a cane. Rebecca recognized it took longer for her to process information and her short-term memory was still a problem. Sometimes she’d find herself pausing in the middle of a sentence searching for a word or phrase. To help, Rebecca pushed herself to play board games and other activities aimed at improving her critical thinking skills.
Despite her strides, the recovery process felt lonely and isolating during the work week. With Ryan at work and Dean at daycare, Rebecca found most of her time spent at home with baby Grant. Without clearance from her doctors to drive, Rebecca couldn’t go to the park or visit friends with Grant. Her husband’s positivity and patience helped Rebecca in her lowest moments. Ryan often reminded her to cherish her time at home with their youngest son while she can. In a couple months, Rebecca planned to return to work part-time as a high school guidance counselor, which will be just less than a year after her three brain surgeries.
Life may not be like it was before and Rebecca accepted the fact that some things will never return to her old “normal.” Now, Rebecca appreciates the little moments more than ever.
Walking into the kitchen, she pulled Grant out of the carrier and placed him in his high chair. Dean was happily eating his silver dollar pancakes at the table.
“Good morning beautiful,” Ryan greeted Rebecca as he continued flipping pancakes. He handed her a green smoothie with a smile.
“Did I mention today how amazing you are?” Rebecca asked.
“Can I get that in writing?” Ryan joked in response.
“No really Ryan, I mean it,” Rebecca said softly looking at her husband and two boys. Dean was making silly faces at Grant, who laughed at his big brother. Rebecca sighed with contentment. “I feel so lucky that I get to be here for all this. The moments. Big or small.”
“I don’t want this to be something that just happened to me that didn’t change my life in some way for the better. I want to use what we’ve learned on this journey and make some sort of life change. I don’t know what that looks like just yet, but I just don’t want to go about my daily life and not remember and not appreciate the second chance that I got.”
Writer’s note: Rebecca and her family extend a heartfelt thank you to the medical team at Stanford Health Care for saving her life when they performed her initial brain surgery. Deepest gratitude also goes to all the health care professionals in northern and southern California who helped Rebecca and her family throughout her journey. Also, thank you to Stanford Health Care for the medical terms used in this article to bring awareness to an arteriovenous malformation (AVM). Rebecca hopes sharing her story will provide others impacted by this rare brain condition with hope.