Mom Brings Daughter to ER with Pneumonia. Learns Toddler Had a Stroke and Needs Fingers Amputated (Exclusive)

Shauna Robison was shocked to learn what she initially thought was happening with her toddler was only part of the problem

A new mom was overwhelmed to learn that what appeared to be one serious condition in her toddler was really a symptom of a bigger issue.

Shauna Robison was concerned when her then 18-month-old daughter, Kailyn Bever, became ill and was diagnosed with pneumonia. But as time progressed and Kailyn's condition failed to improve, the mom learned just how much it would take to find answers for her daughter.

"She had been in and out of the doctor's office several times. We had been to the ER once and we had been to urgent care a few different times as well, all within a week," Shauna tells PEOPLE. "They tried putting her on different antibiotics and different medications, and it just wasn't working."

Shauna was doing her best to tend to her toddler, who began to convulse in her lap one day while she was nursing her.

"I thought that was weird, but she appeared to be okay. I started nursing her again and then it happened again and she started throwing up a bunch," she recalls. "I went to sit her down on the floor and she just fell over to her side. I sat her up again, and she fell over again."

The first-time mom nervously reached out to her own mother for guidance, who recommended Shauna take Kailyn back to the hospital just two days after they'd last been there.

"When we got to the hospital, they admitted her because they didn't know what was wrong. She was very sleepy and hard to wake up, which they said was because her pneumonia had progressed."

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Related: Doctors Tell Mom Not to Worry After Toddler's Febrile Seizure. One Month Later, He Dies in His Sleep (Exclusive)

Even in the hospital, Kailyn didn't make progress. She could sit up, but wasn't communicating verbally. She continued to gag and choke when Shauna would attempt to nurse her, and she continued to seem lethargic. Doctors did a CT scan to see if meningitis might be to blame, at which point they discovered the 18-month-old had suffered a stroke.

"Right away, they gave her an MRI, so they could get a clearer picture of what was going on. But I would say it was over well over 24 hours before they discovered the stroke," she shares.

A horrified Shauna learned that the medical team couldn't pinpoint what caused the stroke, recalling, "I kept asking all these questions and they just told me they didn't know the answer and were sorry."

"They said they needed to perform brain surgery on her right away because her brain was swelling. At that point, they made me leave the room because they had to intubate her before surgery. I think that was the point where it all kind of hit me. It was just super upsetting and I didn't really understand why this was happening."

Shauna leaned on family and friends as she waited to learn about her daughter's condition.

"It was really hard because Kailyn's dad actually had the same type of pneumonia that she had and he was doing really, really bad. He was actually in the ER when she was having her brain surgery done. It was a really crazy time, but we had all of our friends and family there to support us."

Shauna credits her mom for helping her process the immense amount of information coming at her from all ends, noting, "She was by my side the entire time and I definitely needed it because I felt like my brain just couldn't think anymore because I was so upset by what was going on."

One of the people who stopped by to show support was a family friend who worked as an anesthesiologist at the hospital. When she visited Kailyn after her surgery, she noticed mottling on her arm and brought it to doctors' attention.

"She thought maybe it was her IVs, but after we took them off and realized it wasn't going away, she talked to the doctors and they wanted to do an ultrasound," Shauna explains. "That's when they discovered Kailyn had a blood clot in her artery, which from there we discovered was the cause of the stroke."

At that point, Kailyn was determined to need more specialized care than the hospital could provide. She was life-flighted to C.S. Mott’s Children’s Hospital in Michigan, a ride Shauna was unable to take with her little girl.

"My mom and I drove the 45 minutes and when we got there, It was about five hours before we could get back in the room with Kailyn to be with her. During that time, they were assessing Kailyn, going over all her medical history. They determined it was affecting her hand, and "we were told we had a choice to make."

"They didn't want to give her heparin because if they gave her blood thinner too soon after a stroke, she could have a brain bleed. So they said, either you can give her heparin and risk her brain bleeding, or we could hold off, but she might lose her arm," she tells PEOPLE.

"At that point, we decided she could live without her arm, but we can't live without her," Shauna says. "We decided to hold off on giving her the heparin. With that decision, the clot, which was being monitored every 12 hours via MRI, was progressing."

"That's when they had to perform surgery and thrombectomy," Shauna continues. "They had to go in and fish out the clot. She had that surgery and by then, it was too late to save her fingers so about a month later, she ended up having to get her fingers amputated."

Kailyn remained in the hospital for nearly six weeks, during which Shauna and her mom kept track of everything doctors were saying in a notebook since they were consulting with so many different professionals.

"My mom was kind of like a secretary. She would write down all of the questions that I was asking and all of their answers and all the results of the tests. And then after they were gone, we would go through all the information and write down any more questions that we had for when they came back."

When there came a time when doctors were making different suggestions, the new mom felt overwhelmed and arranged a care team meeting to get everyone on one page. It was smooth sailing from there, but Shauna was still anxious when it came to taking her little girl back home.

"It was a really difficult transition, almost like ripping a band-aid off," Shauna says. "I feel like no matter how much the hospital tries to prepare you for things, you're still not ready. I remember driving home and I was just so nervous not having all those machines to tell us she was okay. And if something was going to happen, what should I do? It was really scary, especially for the first week or two."

With the help of a home health nurse, Shauna learned how to care for Kailyn and take care of the wound from her amputation surgery. Luckily, the toddler "had no idea what happened" and was very much herself.

"I think it was harder for me watching her have to relearn all those milestones that she already had learned, like sitting up by herself and then crawling and walking and talking. She had trouble eating because she had been aspirating, so it was just really tough to see this young, vibrant girl have this traumatic event happen and struggle to do all the things she'd already accomplished."

It's been almost seven years since the medical event and today, Kailyn gets reassurance about her differences from family and friends.

"She'll ask, 'Why is my hand like this?' or say she's different from other kids. We just tell her that when she was younger, something happened to her brain and in her body that caused these things to happen," Shauna says.

"She kind of understands that's the reason why she's different physically because when you just look at her or talk to her, she seems like a normal kid. It's hard to know she's had a traumatic brain injury. We read a lot of books about limb differences. There's some about strokes too, but they're harder to come by because it's not something that happens all too often."

Shauna has continued to find support in sharing Kailyn's story and hearing the stories of others. After finding a Facebook support group, she learned about the Get Ahead of Stroke campaign. SNIS President Mahesh V. Jayaraman, MD says the acronym BEFAST can save lives by teaching parents of children of all ages the signs to look out for — Balance trouble, Eyes (double vision or loss of vision), Facial drooping on one side, Arm weakening, Speech difficulty, and Time.

"Sometimes, as in Kailyn’s case, it can be trouble with their balance. In other times, the child may seem very fussy or irritable, difficult to awaken, or repeatedly vomiting in combination with these other symptoms. If a child shows any of these symptoms, parents should call 911 to receive immediate medical attention," Dr. Jayaraman says.

"There are now proven stroke treatments for young people and adults that were not widely available even a decade ago, with many patients being able to return to normal or near normal activity. It’s important to know the signs of stroke and act quickly."

Shauna wishes she knew that "vomiting is a sign of stroke in young kids, as well as loss of balance," but is glad that sharing Kailyn's story brings awareness to other parents. Though they haven't met any other kids who have suffered strokes, both she and Kailyn feel grateful to connect with other families who have faced medical challenges.

"Kailyn has met another girl with a limb difference. She was born that way, which is a little different, but Kailyn really enjoyed that. We've had other community members who have had amputations come visit her at therapy, which has been inspiring for her and super helpful for her to see."

Kailyn does still deal with the effects of her stroke on an everyday basis. "We see a neurologist every year, just to make sure that she's stable. We see a prosthetist for the prosthetic she has for her hand," Shauna says.

"The pneumonia permanently scarred her lungs, so we see a variety of different specialists for her lung conditions. We also go to physical therapy and occupational therapy weekly," she continues, noting that while she may stabilize out of those therapies, "the lung condition will be a lifelong issue that she will have to manage."

Shauna hopes other parents who find themselves in an emergency with their kids feel empowered to "keep advocating and asking questions."

"It's been seven years and we still don't know exactly what caused the blood clot or what you know or how that all happened. Every day we go to doctors, I always just keep asking questions and keep advocating. As children grow and develop, you're always going to find something new that you didn't know before. Once you think you're in the clear you know all of a sudden, something else happens. So you just kind of take it and stride and do the best you can."

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