Her Son Was Born With 'Bubble Boy Disease' — Here's How They Lived in Isolation For More Than a Year

'I missed literally every major celebration in our family because they all happened while we were in isolation.'

3/26/2020 9:31:00 PM

'I missed literally every major celebration in our family because they all happened while we were in isolation.'

When her newborn son had a severe immunodeficiency, she had to go into a 3-month hospital quarantine before another year of home isolation with her family.

can feel overwhelming, particularly for families who are struggling to cope with their sudden lack of freedom and newfound limitations. For one Los Angeles-based family, however, the government mandate to"shelter in place" for several weeks straight has been, well, a theoretical walk in the theoretical park.

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Just over two years ago, Armené Kapamajian gave birth to her second child, a boy named Sasoun. And for that first week, all was well.That is, until she and her husband, Michael, discovered their baby was born with a rare disorder calledSevere Combined Immunodeficiency

, or SCID. The disorder is perhaps more commonly known as the"bubble boy disease" — those who have it are extremely vulnerable to bacteria and viruses as benign as the common cold, and they are likely to die if they don't live in a sterile environment.

Before Armené could even grasp how her family's life would be upended, the flip had already been switched. In a blink, she found herself trapped in a 15-foot by 15-foot hospital room, alone with her newborn.ADVERTISEMENTBefore Armené could even grasp how her family's life would be upended, the flip had already been switched. In a blink, she found herself ostensibly trapped in an aseptic 15-foot by 15-foot hospital room, alone with her newborn. She wasn't allowed to see her 2-year-old son, Vaughn, in person, and the few times her husband — cloaked in a gown and mask — was able to visit, they couldn't even touch. What followed after those three excruciatingly long months was a transition to what many of us are now faced with: in-home isolation. Only for the Kapamajians, their compulsory quarantine lasted for a full year, and for Armené and her children, there were no walks to the park, no quick trips to the grocery store, no play dates, no preschool, no birthday parties, no running around the backyard. She didn't feel a blade of grass or the fresh breeze through an open window for more than a year.

"I think, as with the rest of the world right now, you are just thrown into it," Armené told POPSUGAR of her 15-month experience in isolation."There wasn't a chance to figure out how to cope. At the beginning, I was just very numb and incredulous that this was happening, and as days went on, it just started to feel normal."

"We Had No Idea Anything Was Wrong"Back in November 2017, Armené — a former grade-school teacher — had just given birth to her second son in relatively unremarkable fashion. She and Michael, an ophthalmologist, were sent home from the hospital with their newborn baby after the requisite two days.

"Exactly one week later, we received a phone call from our pediatrician that one of the newborn screening tests had come back abnormal," Michael told POPSUGAR. This would be how they learned of his diagnosis."It made him exquisitely susceptible to life-threatening infections because he was essentially born with an immune system that did not work. We had no idea."

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They quickly learned that Sasoun would need a bone marrow transplant, and until they were able to determine a match and undergo the procedure, neither Sasoun, nor Armené, could contract even the smallest infection for fear it would be fatal."I couldn't process anything our doctor was saying because it felt like the world started to crash down around me."

"My mind went blank, and I couldn't process anything our doctor was saying because it felt like the world started to crash down around me," Armené recalled."I remember thinking, 'How is this happening? He's so little. He didn't even begin his life yet and already it could be taken away.'"

Without even a day to emotionally prepare, she and her week-old baby were put into a strict hospital quarantine."There was definitely a deep sense of doom," Michael recalled. He thought they'd be in isolation for 30 days, max."I was very worried about Armené's mental health and Vaughn's ability to cope without seeing his mother for one month. I had no clue it would be three."

Related:Families Are Taping Drawings in Their Windows to Stay Connected and Spread Joy"I Felt Like a Ghost"There was no easing into quarantine life for Armené. One minute, she was a typical mom of two, balancing her toddler's needs with the inconsistent naps and feeding schedules of a newborn, and the next, she was cut off from the world she knew.

"I was not allowed to leave the room, even for food," she said of the sparse hospital quarters, which included one small locked window that overlooked a parking garage."My husband would come in a few times per week to take our clothes home, wash them, and bring them back."

"I missed literally every major celebration in our family because they all happened while we were in isolation."The doctors and nurses at UCLA Medical Center in Santa Monica were given orders to enter their room as little as possible to prevent contamination."Aside from bringing a meal tray and checking on us twice a 12-hour shift, it was really just sitting in a room alone."

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It may have felt like a footnote by this point, but Armené was still a woman recovering from childbirth. She was experiencing jarring postpartum hormonal shifts while having to care for her new baby around the clock without any support. Without a single break. Without a reprieve from a single diaper change or crying fit.

There was no question that she'd entered into a depression."I think the hardest part was just being left with your own thoughts," she revealed."I felt awful about everything. I felt terrible I wasn't there physically for Vaughn. I felt like a ghost for Sasoun. I was trying to give him the needs of any baby — love, affection, nutrition — while also being scared out of my mind for his future. I tried to save up the sadness for when he was sleeping."

Adding to the pain of this adjustment period was that it overlapped with the holiday season and all of her family's eagerly awaited milestones — she missed celebrating Vaughn's third birthday and her husband's birthday. She spent her own birthday, as well as Christmas, New Year's, and Valentine's Day, in a starkly different reality than the one she'd planned."I missed literally every major celebration in our family because they all happened while we were in isolation."

She didn't get to take adorable photos of her two boys under the Christmas tree wearing the matching holiday pajamas she bought. Still, the hospital gave her festive supplies to decorate the room. However, while other patients got tabletop trees, because of Sasoun's condition, there was no way to ensure those were germ-free. Instead, she strung lights on the wall in the shape of a tree and attached a stocking to his bassinet. She was grateful for the hospital's Child Life program, which delivered a gift from Santa to Sasoun and even a few toys for her older son that she could wrap herself before they were delivered. Meanwhile, Michael sent her photos of Vaughn opening presents in his Christmas PJs, and although she appreciated them, it still served as a"painful reminder" of all that was missing.

"It was just the expectations I had for our life that were not going to happen," she said."It Was Too Difficult, Watching Everyone's Happy Lives Go On"Oddly, in that first month of hospital isolation, Armené was unable to escape the triggers of the outside world.

She'd been moderately active on social media, but it quickly became another flashing neon sign of what she didn't have."Anytime I signed on, I saw newborns who were born the same time as Sasoun at home, happy and snug in bed," she said."Meanwhile, I was pinning down my screaming child in a cold hospital room as he was getting test after test done, alone. I saw beautiful babies in such sweet first family photos." She had planned to have professional newborn portraits taken of Sasoun, but it never happened."I would feel happiness for the family, but then I would feel awful because it wasn't like that for us."

What's more, it was"too difficult watching everyone's happy lives go on" while hers was frozen at its worst chapter."Their 'big' problems and 'annoyances' of the day were meaningless things, like, 'Ugh, the Starbucks barista put the wrong milk in my drink!' kind of stuff, which would totally bother anyone!" Armené admitted."I didn't want to have negative thoughts toward friends and family, so I just cut myself mostly off."

Watching cable TV lasted a week, too."Since it was Christmastime, it would cut to a commercial of a smiley happy family gathered around the table or baking cookies," she said."And it was the same ads over and over again." Michael brought her a Roku streaming device that allowed her to watch shows commercial-free, and that helped.

Soon, she discovered a curious antidote for her feelings of remorse over others' joy. She began reading about truly dark moments in history. She read firsthand accounts of the Holocaust and the Armenian Genocide."It helped gain perspective," she said."You can go down in a spiral of 'Oh, my life is terrible, why me?' But then you read about [historical tragedies] and you rethink your situation. My family is safe, I'm in a place where people are caring for us, I have food, I have clean clothes, I can shower, we have electricity and running water. That's even more than a lot of people in the world."

"Time Crawled Every Day"Eventually, Armené began to find what Michael called their"new normal." A few weeks earlier, they'd gotten the good news that Vaughn was a complete bone marrow match for his little brother. What proved even more miraculous? While deliberating their fears of having to conduct an invasive bone marrow harvest on a 2-year-old boy under general anesthesia, the couple remembered they'd saved Vaughn's cord blood when he was born. Other than a few blood samples, that was all they needed for the transplant.

Armené and Sasoun were transferred to a different hospital for the procedure, and it was a much-needed change of scenery.On one hand, the room was larger, so she had space to walk around, and it had more windows and a desk — so she no longer had to eat every meal in her bed. But on the other, she no longer had a bed at all. Because Sasoun had moved into a full crib and would be hooked up to bulky machines at times, they could only supply Armené with a pull-out armchair.

"It was awful," she said."There isn't room to roll over, so you have to flip to turn your body. I was always really happy at the end of every night when I could jump out and be done sleeping."Once at this new facility, she focused on creating a schedule for herself.

"I wasn't interested in hearing people's sympathy or telling me it was going to be OK when no one knew if it was going to be. I didn't have the capacity to put on a brave face for everyone.""I found a pattern in the day, and it started to feel comfortable and familiar and not so unexpected anymore," she said."I made sure I was up and 'dressed' — just comfy leggings and tops — before the doctors rounded. I folded and put away my bedding in the closet, so my room felt neat and tidy. I took a shower, did my hair, put minimal makeup on every morning while I knew Sasoun was asleep — that made a world of difference."

She'd spend her mornings eating breakfast and listening in to the different groups of doctors as they rounded. From there, she braced herself for another day alone."I would wait until a certain hour before I could order a meal, and I just kept staring at the clock thinking, 'OK, now it's the afternoon! Good job!'" Armené said."Time crawled every day. Mentally, it was exhausting."

Related:It's OK If You Do Nothing"Extra" With This Time at Home With Your KidsShe listened to music on the hospital-issued iPad, she did a little online shopping, and she watched the Winter Olympics in real time, which gave her something to talk about with nurses. And she binged TV shows. She watched all 201 episodes of

The Office,and the first time she remembered laughing out loud was in her second week of isolation during an episode ofThe Marvelous Mrs. Maisel. When that happened, she said,"I knew that it must be a really good show." She'd alternate between light sitcoms and dark historical nonfiction. That and video-chatting with Michael and Vaughn. She'd read him bedtime stories and say goodnight every evening.

"I made themistake of not FaceTiming enough each day, but really that was because I wasn't interested in hearing people's sympathy or telling me it was going to be OK when no one knew if it was going to be. I didn't have the capacity to put on a brave face for everyone."

"You Forget What It's Like to Have Your Spouse Next to You"Because of Michael's medical background, he was the family's first line of defense in understanding the protocols and prognoses that were being put into place from the moment Sasoun was diagnosed. Armené entrusted him to"handle the medical care of our son," so in addition to raising Vaughn with the help of his own mother and caring for his patients, he spent every free moment dissecting updates from dozens of different doctors.

One of the first bits of information he recalls getting — a text message from their immunologist — had nothing to do with his son."He was cautioning me that these types of things can be very taxing on a relationship," Michael recalled."I wasn't sure what he meant when he texted it, but as time went on, I began to understand. An extended period of time away from your spouse, combined with an intense level of anxiety, fear, and uncertainty, almost makes you forget what it's like to have your spouse next to you every day."

And because his main role was acting as the messenger of often demoralizing medical updates, he struggled to communicate with Armené. He did his best to share only what he thought she was emotionally equipped to handle, which meant he was often alone in fully understanding the stakes.

Unsurprisingly, they fought. They'd get angry and lash out at each other."We would argue about our own frustrations and how we were looking at things," he said."I don't think Armené was in a place to be able to handle some of the comments I would make about the situation . . . she needed me to be stronger."

In hindsight, Armené recognized that he was as scared and frustrated as she was, but in the moment, it was hard to believe."I tried to keep reminding myself that he was going through this, too. In times like this, it doesn't make sense to create a divide."

And although they had very few moments of connection in those three months, they tried to make those short, 10-minute intervals count.Sure, when Michael dropped off clothes to the hospital on Armené's birthday, she dressed up — in"my very fancy leggings," she joked — for his arrival, only to watch him fall asleep on the chair for most of the visit. But he certainly redeemed himself other times. Like with the Roku, and on Valentine's Day.

"We couldn't have live flowers in the room because of isolation precautions, so Michael brought me a really pretty fake potted orchid," Armené recalled."It looked so real that nurses kept stopping him to tell him that he couldn't bring it in the room." She still has it and thinks of how far they've come every time she walks by it.

"Coming Home, I Felt Like I Was at Disneyland"Six weeks into their hospital isolation, Sasoun underwent the bone marrow transplant, and the results were promising. After several more weeks of testing, the medical team determined it was safe to bring him home as long as they maintained a similarly sterile quarantine environment. For the next year, their home would become the bubble.

"I felt like I was at Disneyland," Armené said of her homecoming. In fact, on the walk to the car from the hospital, she felt the cool breeze on her face and realized she hadn't touched fresh air in three months. Caught up in the moment, she posed for a photo that reenacted a scene in

Shawshank Redemptionwhen Andy Dufresne escapes prison and stands, arms outstretched, in the rain."I was so incredibly happy and thankful."She recalls thinking how beautiful her house was —"it felt so ornate compared to stark hospital walls and medical equipment." She was grateful for real glasses and silverware and plates and for having a bed again. But she was mostly relieved to have her family all together for essentially the first time."To be able to touch and hug Michael and Vaughn, it was just so nice."

It was also . . . different."The most interesting thing I noticed after they came home was — and I'm not saying this was bad or intentional, but rather inevitable — that our household was very much Armené and Sasoun and then Vaughn and me," Michael said."It didn't feel like a unit, but rather two units living together."

They made a conscious effort to"meld our family back together. And to"make up for lost time," Armené created the happiest home she could."We celebrated everything, since we missed out on so much while we were in the hospital. We decorated for each little holiday and made everything a big deal. We were most definitely happy to be celebrating life."

"All day with small children in the house gets tiring because you are never alone and always needed, 24/7."Yet, as with most new things, the novelty wore off. They weren't allowed to play in the backyard or sit on the front porch. Sometimes, loved ones would come up to their window and wave or make conversation, and although it made Armené feel loved and remembered, her feelings shifted."Later in the day, if I stepped back and thought about it, it reminded me of the situation we were in," she said."I felt bad for both of my boys because they were not leading normal lives."

As cautious as they still were about Sasoun's health, they now had added concern for Vaughn."He was supposed to be in school, he was supposed to be able to play soccer, or even just play outside with me like we did when Armené and Sas were in the hospital," Michael said."Having them back home placed more restrictions on Vaughn because now we couldn't risk him getting sick as it would pose a huge risk to Sas."

Related:Educators Explain Why Parents Shouldn’t Be Let Off the Hook With Homeschooling Their KidsThey bought a Little Tikes inflatable bounce house that took up their entire living room just so he could have space to run and jump and play. Although Vaughn understood a lot of their situation and"seemed to handle it so well," Armené, who used to be a teacher, was concerned about his social and emotional development. She made a production out of the school experience.

"Every day, I put a backpack on him with his supplies and I kissed him goodbye and told him to have a good day at school," she said."Then he would go out one entrance of the kitchen, walk around the whole first floor of our house and come back in another entrance where I would greet him as my student. It would make him so happy. He called me Mrs. K."

Armené would send photos from their"school day" to Michael who admitted they were"heartwarming and depressing" all at once. Just as many families around the world are experiencing to a lesser degree right now, being home nonstop was a special form of exhaustion for Armené.

"All day with small children in the house gets tiring because you are never alone and always needed, 24/7," she said."It's hard when you are making every single meal of the day, day after day. I missed not having to cook if I didn't want to, and I missed going out with Michael or with friends. I missed alone time and feeling like a human."

"I Literally Had to Fend Off His Hugs So I Could Decontaminate"Because Michael still had to leave the home for work — and thus ran every errand — he was Sasoun's biggest health threat. Whenever he returned, he had to go through a rigorous decontamination process.

"I'd get home, remove my clothing in the laundry room and place it in the washer, wash my hands, go upstairs to take a shower, and then come down with clean clothes to join everyone," he explained."In the beginning, when I still wasn't used to this, sometimes I'd just go out for an errand on a Saturday, come home and decontaminate only to realize as soon as I was finished that there was something else I needed to do, which meant going through decontamination again. There were days where I had to do this three times in a day. My skin was cracking all over." But soon enough he learned to plan his outings to minimize the number of decontamination rituals he'd have to undergo.

"Just getting home and being able to hug everyone was something I missed a lot," he said."It scared me because as much as Vaughn led us to believe he completely understood what was going on, he was still 3 years old. I didn't want him to think I was cold, but the first few times I came home from work after Armené and Sas had gotten home, I remember Vaughn coming to the door to hug me and I literally had to fend off his hugs and tell him to wait so I could clean up."

It took a week before Vaughn no longer ran to greet him at the door. Michael had successfully trained him out of that behavior."That wasn't what I wanted, but what could I do?"Inevitably, Michael would get sick."The first time I thought I might have a cold, I took a box of masks upstairs with me and locked myself in the bedroom." It wasn't until January 2019 that he truly got sick, nearly 10 months into their home quarantine. To be safe, he rented a hotel and stayed there for two nights.

"Once I started feeling better, I came home but maintained strict respiratory precautions and locked myself in the guest bedroom," he said."Every morning when I'd leave, I would spray Lysol in the entire bedroom and back out of the room, then close the door. I'd then walk backwards through our living room and to the garage, spraying Lysol in front of me to 'cover' the areas I'd walked through."

Eventually, though, Sasoun's blood tests indicated that his immune system was working, that it could ward off small infections. First, they were cleared to go outside. Sasoun's feet touched the ground for the first time in his life. Then, they could allow a few extended family members in their home — so long as they followed strict protocol and could verify they weren't sick that past week. They eased slowly into every new glimmer of freedom.

"I'm So Happy to Be With People Again"It's been 28 months since Sasoun's diagnosis, and they've been out of their home isolation for a year. Vaughn's now 5 and Sasoun is a healthy 2-year-old."This past summer was the first time we all went out for a family dinner since Sasoun was born," Michael said."We just went to California Pizza Kitchen, but, man, for us it was such a landmark moment."

They took dozens of photos of that meal as they began to realize that, maybe, they could"be normal" again.For Armené and Michael, this came with newfound happiness. The experience taught them to be kinder with each other and more respectful.

"Like most couples, we argued about stupid things and got on each other's nerves about nonsense compared to this," Michael said.He added that even though he used to"look at every little thing and overanalyze the crap out of it," he shrugs off small issues now."I feel healthier and better equipped to be a parent. I honestly think I would have driven myself or Armené and the kids nuts had I remained as nitpicky as I was before this happened to us."

Armené, in particular, has appreciated her loved ones so much more."To this day, whenever anyone announces a birth, I hold my breath for a week.""Every day is a gift with them," she said."My grandfather passed away while we were in isolation, and I couldn't go to his funeral — that hurt a lot, that I couldn't say goodbye and be with my family at a difficult time. I really enjoy every single outing. That hasn't worn off, and I'm so happy to be with people again. I probably talk too fast when I'm with friends because I'm just so thankful."

It was with great trepidation that they got to this point and not without some emotional scars. Although Michael said his intense negative feelings — of"fear, anger, confusion, hopelessness, vulnerability, and dejection" — have gone away, Armené has held onto a bit more.

"To this day, whenever anyone announces a birth, I hold my breath for a week," she said."Luckily, all their babies are healthy, but I don't really relax for them until a week goes by."She also had a hard time exhaling whenever they left their home. She felt paranoid Sasoun might catch something. This past October, he did.

"That would be the first time his immune system would actually be tested, so we were nervous," Michael said."But he handled it. Three days and it was gone. Did this little guy actually do it? Did he just clear an infection by himself? It was amazing."

Armené is still careful. She uses covers on grocery carts and high chairs, she cleans restaurant tables with hospital-grade wipes before sitting down, shesanitizes Sasoun's hands constantly."When we pick up Vaughn from school, I get scared when other children run up to see Sasoun," she said."I usually scoop him up or wash his hands immediately. I second-guess a lot of things, like, 'Oh, he touched that . . . and touched his face. Will he get sick?' A friendly grandmother pinched his cheek. 'Did that person cough into their hand or wipe their nose recently?' I calm myself down by saying, 'Well, it already happened so we will just have to wait it out and see.'"

"It Feels Like All of This Was For Something"Of course, therecent coronavirus outbreakhas affected the Kapamajians just as it has the rest of the world. Because he works at a hospital, Michael admits he is"scared to death of bringing the virus home" — he has reverted back to his old decontamination procedures.

The only difference for Armené is that she's not panicking at the thought of staying at home for an extended period of time."All I could think about was, 'God, I can't believe we are back here again. I can't believe we have to wipe everything down again.'"

"The first day when I was gathering supplies and I knew it was the last time I would be out for who knows how long, all I could think about was, 'God, I can't believe we are back here again. I can't believe we have to wipe everything down again. I can't believe it will be so long until I see any of my friends or Vaughn can go to t-ball and school again,'" she said.

Because they planned to go into voluntary isolation before any mandates were even being established, she was one of the first to cancel plans."I'm missing wedding showers, christenings . . . my family had to cancel their trip out to visit us," she said."Just as everyone else I am sure has done, I got so frustrated, I cried. I was so angry that once again we were going to put our entire life on pause. I was frustrated for my kids, that it seems like they keep having to spend long periods of their life in isolation."

Michael reminded her: they'd be OK. They had done this before. And if anyone knew how to do it, it was her. She said their first day back in isolation felt so familiar and oddly safe."I knew that by staying in, I was keeping not only our family safe this time, but it seemed our entire community," she said."I knew I was missing nothing because

everythinghas been canceled foreveryone. We are all in this together, so I have zero FOMO. And in a weird turn of events, I became an isolation expert among family and friends. Every day I check in on someone or someone calls me and asks my advice."

She even started filming Facebook videos with tips on how to properly self-isolate."It feels like all of this was for something. It wasn't just a random, awful hardship we went through. Maybe we went through this so we could offer some help or consolation for everyone else going through it. Because if we did this for a year, we can all do this for a few weeks or even months."

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