Her Baby Had to Be Revived 8 Times in the NICU. Now She's Talking About His Rare Condition to Help Moms Like Her (Exclusive)

• Audrey Kandil's son, Rami, was born with cerebrocostomandibular syndrome
• According to the National Institute for Rare Disorders, this is a rare genetic disorder characterized by a combination of abnormalities affecting the brain, ribs and jaw
• Not long after giving birth, the Cincinnati local started sharing her own story online. Then, she watched as thousands people followed along on TikTok and Instagram and many of her videos went viral, amassing millions of views

When Audrey Kandil was told that her newborn son would have long-term medical needs and most likely live with a tracheostomy tube, ventilator and G-tube, she was beside herself. The situation was so new and complex for her, and changed the way she'd envisioned her growing family's future.

That’s when Kandil, from Cincinnati, began searching online for other moms who had kids with a tracheostomy tube, also referred to as a trach. She went to Instagram, typed in the hashtag #trachmom, and started consuming content.

One of the first moms she found posted a video of her son, who was about a year older than Kandil's son, and he had a trach. The boy was smiling, laughing, walking, and in that moment, Kandil knew everything was going to be okay. She didn’t know what life would look like or what challenges lay ahead, but just seeing one child with a trach who was so happy changed her whole perspective on what she was going through.

Inspired, she started sharing her own story online. She wanted to help others the way Lauren — the mom she’d discovered — had helped her. Then, she watched as thousands of people followed along on TikTok and Instagram and many of her videos went viral, amassing millions of views.

"When you get a diagnosis like this or get told something like this, you feel so lonely," Kandil, 30, tells PEOPLE exclusively. "You're isolated from the world because all your friends don't have kids with trachs typically, you're the first one or the only one. And so it's like, 'Oh my God, I can't believe this is happening to me.' 'I'm so alone.' Being able to share my story with genuine intent of just trying to help other people like me who were in my shoes six to twelve months ago is surreal."

Kandil's son, Rami, was born with cerebrocostomandibular syndrome, which, according to the National Institute for Rare Disorders, is a rare genetic disorder characterized by a combination of abnormalities affecting the brain, ribs and jaw.

She tells PEOPLE she and her husband, who she met while working together at the local children's hospital, began to realize something was wrong when Kandil was 20 weeks pregnant. She went to have the anatomy ultrasound, and her son was hiding his chin. Although this is normal — babies don’t always make an ultrasound easy — she came back four weeks later and he was still hiding his chin, and her amniotic fluid had started to increase.

"The doctor said, 'Well, I'm worried that your amniotic fluid is increasing. We can’t see if he’s swallowing or not, so let's get a 3D high-res ultrasound,' " she recalls. "I went to a specialist, had the ultrasound, and they said, 'Your son has severe micrognathia,' which is where the chin is pushed very far back. It was essentially blocking his airway and his ability to swallow."

"We had to do genetic testing and other scans — just going down the rabbit hole of figuring out why he had micrognathia," she adds. "We started with an amniocentesis, a genetic test, and that actually caused me to go into labor. I was 27 weeks pregnant when I went into labor, and they rushed me to labor and delivery, thinking I was going to have the baby right then. They gave me medicine to slow the contractions and keep me from progressing further, and I was admitted to the hospital."

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Thanks to her care team, Kandil was able to stay pregnant for another 10 weeks, spending that time at the children's hospital where she worked, now as a patient. While there, doctors made a plan: Kandil was going to have a C-section, and they would place a trach in her son at birth, called an "exit to airway" procedure.

On April 6, 2023, Rami was delivered and doctors trached him while he was still on placental support. From there, they ran more tests and discovered he had cerebrocostomandibular syndrome, which Kandil says is as rare as it is difficult to pronounce: only about 1 in 100 babies since the 1970s have been diagnosed.

Immediately after birth, Rami was transferred straight to the neonatal intensive care unit (NICU). Since patients cannot hold a trach baby until the trach is mature, she didn’t get to hold him until he was 5 days old.

"Originally, kids with this condition didn’t survive birth because of the micrognathia — they wouldn’t get enough oxygen to their brain, and they would pass away," Kandil says. "He was born with seven ribs on the left and eight on the right. They’re spaced differently, and some sections of the ribs are missing, though they exist in a different form."

"The nurses and everybody tried to accommodate things," she continues. "They tried to scooch my little wheelchair up as close as possible to his little NICU bed, and I would just hold his hand. That was enough for me. I couldn't control it either way, so at least I could be in the same room and be in the same hospital as him. Some moms have to be at a completely different hospital. So I was just happy that I could go see him every single day."

Following the birth, Kandil was in the hospital for another five days. After getting discharged, she and her family basically lived in the NICU for another five-and-a-half months. During that time, doctors had to revive Rami eight different times. Kandil recalls how, in those moments, her son would grunt and clamp down, completely blocking his airway. His oxygen saturation would drop to 0, and his heart rate would fall to 0 as well. Most of the time, doctors could just attach a little bag to his trach and give him breaths. With that, he’d come back, and after maybe 20 seconds, he’d be fine.

But one time, he clamped down and completely crashed. The medical team did a total code: chest compressions, intubation, everything. Kandil vividly remembers how he was completely "lifeless."

"To see your entire world, when you think you’re about to take him home, completely lifeless on the table with 50 medical professionals around him doing chest compressions ... I thought, 'I don’t know if this is it,' " she recalls, her voice breaking. "I don’t know if this is the end."

Though they had to revive him several times, after several months, the family was finally able to bring Rami home. Since then, Kandil and her husband's lives have completely changed: Kandil left her career to become a stay-at-home mom to take care of Rami, now almost 2, and began sharing her daily routine on TikTok and Instagram.

On a daily basis, the first thing Kandil does when she wakes up is relieve the night nurse, as Rami needs 24/7 monitored care. She gets a report from the nurse about how Rami did through the night, and then she begins her day.

When Rami wakes up, he’s still on the ventilator to help him breathe. Kandil disconnects him from it, and then they go about their day pretty typically, whether it’s playing, watching a movie or whatever else he wants to do. Three times a week, he has appointments at home, including physical, occupational and speech therapy.

"Honestly, if you didn’t see that he had a trach in his neck, you’d think he was a regular toddler — running around, laughing, having fun," Kandil says. "He’s with it. He is so smart. He understands three different languages. It’s incredible, everything that this kid has been through. Every day, my whole family and I talk about him. We’re like, 'Oh my God, he just clapped for the first time!' "

"He lives a normal life. We go to the zoo, we go to the library, we go to the mall, we go have fun," the mom adds. "He has playdates. He can interact with other kids, but as you know, any of that could change in any moment for any of us."

"His risk is a little bit higher because he is susceptible to hypoxia if the trach comes out," the mom continues. "And being a toddler now, he's mischievous. He has this little humidification piece that goes on the edge of his trach to keep his airway nice and moist and safe. If you're not paying attention to him and he wants your attention, he'll rip that thing off and throw it across the room, which is such a toddler thing to do. So he knows it's there, but he doesn't mess with it unless he wants his way."

When it comes to food, Rami also has a G-tube and eats four times a day through the tube in his stomach. If he's sick, the family might have to use a nebulizer for breathing treatments, though he doesn’t need them often. Kandil also makes sure to keep his trach tube clean with special equipment, and they receive a shipment of medical supplies every month.

"You wouldn’t believe the amount of boxes and garbage we go through in this house," Kandil says. "I have three big trash cans, and we fill them up every single week with medical supplies and garbage, just from keeping everything clean and disposing of things that can only be used once."

"Having a medically complex child is stressful," Kandil adds. "It’s stressful on you as a person. I had to give up my entire career. It has stressed our marriage ... but I am grateful for everything that we have, too. This trach gave us life with our son, and if it wasn’t for it, we wouldn’t have that."

As for his prognosis, Kandil explains that Rami may never get his trach removed. For now, he has to go to the operating room every couple of months for checkups to ensure everything looks good, including checking his trach and his ears. Rami also has conductive hearing loss, so he wears a hearing aid. This has added another challenge for the family as they work on helping him communicate, learning sign language, using communication boards and pointing to what he wants.

Looking to the future, Kandil hopes her family continues to flourish and that they will give Rami siblings to grow alongside him.

"You can tell how loved my son is by how he treats others," the mom says. "He's so loving and so caring. We just want to keep him healthy and happy. I would like to see some communication from him, whether that be through a speaking valve, him using his own voice, sign language or an AAC [augmentative and alternative communication] device — just to give him more independence and freedom."

"It's okay to look different and still have a good quality of life, and it's okay to be different and still be happy," she adds. "Just because my son breathes differently than you and I do doesn’t mean that he has less quality of life. Just because he may communicate differently than you and I do doesn’t mean, 'Oh, poor him,' or 'Oh, how sad for him.' He's thriving. And at any point in time, anything could happen to you, and we could become disabled. So I just think opening your heart and opening your eyes to people who don't look, act or talk like you — that’s really important for us to have a kinder world."