2-year-old 'SuperKev' shines amid rare syndrome

ST. CHARLES - All it took was a 'like' on Facebook, and Jennifer Lowery was reconnected with a long, lost friend from high school. In the ten years since graduating from St. Charles High School in 2001, Lowery had not talked with Dave Lowery; that is until Facebook gave them something new to talk about.

"Dave found me on Facebook and started liking my photos and we started talking," said Lowery. "He mentioned coming to visit me and I told him to come on down."

Dave took on Jennifer's invitation and traveled to Florida in March of 2011 where Jennifer was living with her mom. In fact, the two enjoyed each other's company so much in March, Jennifer returned home during Memorial Day Weekend that same year to visit Dave. By July, Jennifer called St. Charles home once again.

Although Dave was two years older than her while in high school, the two hit it off as friends as bandmates.

"He was a drum major his senior year and I was a drum major my junior year," said Lowery.

Thirteen years later, Jennifer and Dave heard the wedding bells toll shortly before Thanksgiving. By Christmas - just two days after the fact - the friends-turned-lovers found out they were expecting.

"We were so excited and shocked," said Lowery.

A false negative

Jennifer's pregnancy began as advertised. She didn't have morning sickness, and overall, she felt happy with what was in store for her. But at week 20, her doctor spotted something.

"We went in for our full anatomy ultrasound [and] to find out the gender. The doctor noticed a couple of things, but neither was a major concern," she said. 

Her doctor informed them her baby had a multi-cystic kidney - a threat which would make her baby not have a fully-functional kidney - and that she herself had a single umbilical artery. Neither find gave doctors immediate concern, but warned it could cause slow growth throughout the pregnancy. Despite the initial scare, doctors told them to keep an eye on them between future ultrasounds.

Three 'stubborn' ultrasounds later, Jennifer and Dave finally heard the news they'd been waiting for: 'It's a boy!' Kevin Scott was the decided name; 'Kevin' taking homage from Dave's father's first name and 'Scott' from Dave's middle name.

But during week 24, Jennifer had a medical emergency was immediately admitted to the emergency room at SSM Health St. Joseph Hospital in St. Charles. She was diagnosed with Superimposed Preeclampsia, and was transferred to SSM Health St. Mary's in Richmond Heights. Doctors told Jennifer she would have to deliver Kevin at St. Mary's due to the high-risk pregnancy.

In five days time, all that Jennifer expected for her pregnancy misfired.

"I went into [St. Joseph's] on a Monday and was moved to St. Mary's on a Thursday," she said. "Thursday evening, my blood pressure spiked back up and Friday morning I had a Placental Abruption. Saturday morning, the decision had been made the safest option for me and Kevin would be to move forward with a C-section."

And so, with just a 50% chance Kevin would survive the C-section, doctors successfully brought Jennifer's newborn into the world. Weighing 1.4-ounces and 11.6-inches, doctors told Jennifer and Dave he could not stay in the NICU due to his sickness and was transported to SSM Health Cardinal Glennon Children's Hospital NICU.

"At this time, we still only knew that Kevin was a micro-preemie," she said. "After several days it became apparent that Kevin's right lung seemed like it just didn't want to open."

Doctors spent weeks testing Kevin's lungs. His hypoplastic right lung stemmed from his scimitar vein, getting its name from appearing like a Scimitar sword on an X-ray. The Scimitar vein drains into the inferior vena cava rather than to the left atrium directly, and because of its placement, does not allow the lung to fully grow and expand.

Following the tests, Kevin was diagnosed with Scimitar Syndrome.

Scimitar Syndrome is often diagnosed in the same manner at Asthma, a condition that presents itself later in life rather than earlier. Neonatologists at Cardinal Glennon could not find a singular case of the syndrome in a premature or low birth weight baby. Due to its rarity as a congenital heart defect, Kevin's lungs would take more of a hit than previously thought.

As Jennifer said, Kevin had become a balancing act.

Kevin was in need of open-heart surgery, but doctors said he was too small and too unstable for the operation. His excess blood flow made it difficult to keep him oxygenated. Doctors were attempting to get Kevin to reach five pounds - the 'magic number' for his heavily-needed open-heart surgery. Kevin, through many trial and error, reached the goal by September 2015.

Just five days into the month at five pounds, Kevin underwent surgery.

"September 5, 2015, was a very long and very scary day," she said.

As the Lowery family hoped and prayed for a successful surgery, doctors completed the operation without complication. His Ventricular Septal Defect (VSD) now partially closed the Atrial Septal Defect (ASD), but due to his excess blood flow to his lungs prior to the surgery, his Pulmonary Veins began adapting to the newer, restricted blood flow.

This meant Kevin was additionally diagnosed with Pulmonary Hypertension and Retinopathy of Prematurity (ROP), the latter of which was due to his premature birth.

Kevin later had treatments and surgeries on both of his eyes shortly after. The retina in his left eye could not be saved, leaving doctors to later treat him with complete Retinal Detachment. With that move, Kevin was now completely blind in his left eye.

Kevin began to show signs of steady, yet shaky improvements in the weeks following his open-heart surgery. For example, he required less oxygen and less pressure from his ventilator. But, just as Kevin's health was seemingly on the uprise, the Lowery family would experience another shock to the system.

Dave's father, Kevin, passed away from a heart attack while on vacation at the beginning of October. Kevin was 57-years-old, a captain for American Airlines.

"We are so thankful that he was able to hold his namesake 'Kevin' one time ... we have a photo for which we will always be grateful," said Lowery. 

Even still, the Lowery family continued on. Kevin sat under the observation of doctors, including several failed extubation attempts. Both Kevin's family and the doctors at SSM Health made the decision to receive a Trach and G-Button -- another operation that he'd have to go through.

"Kevin was still needing the vent to breathe, and keeping intubated long could possibly cause further damage to [his] airway," said Lowery of the development.

Just before the end of October, Kevin received his Trach and G-Button, as well as a bilateral hernia repair. The placement of the Trach, in turn, made Kevin considerably mobile than before, although he was still limited.

Moving forward

Six months later in April, Jennifer and Dave moved Kevin from Cardinal Glennon Children's Hospital to Ranken Jordan Pediatric Bridge Hospital in Maryland Heights. The idea was spun with the idea Kevin could progress towards coming home for the first time, although that would prove to be an uphill battle. Jennifer said she felt like Kevin was beginning to get worn out from breathing, unable to tolerate his home ventilator.

"After about a month, Kevin started working harder to breathe and just wasn't comfortable," said Lowery. 

Within a month, Kevin, Jennifer and Dave were back at Cardinal Glennon. Upon arriving back, doctors discovered Kevin had developed Rhinovirus. For most children, something as common as a cold would come and go, but as Jennifer said, children with a chronic lung disease make it much more difficult to fight against. Additionally, Kevin faced more scares: Periodically coding, requiring chest compressions and manual bag breaths in order to bring him back to a regular breathing pattern.

"We ended up in the [Pediatric Intensive Care Unit], paralyzed and sedated for a bit, and then went back to the [Transitional Care Unit] before ultimately being back in the PICU from November until April [2017] when we moved back to the TCU," said Lowery.

By this point, Kevin required sedation and paralytics just in order to interact with a ventilator. Doctors told Jennifer and Dave their son may never be able to tolerate a home ventilator -- meaning his stay at Cardinal Glennon would extend another two-to-three years. He was placed on Neurally adjusted ventilatory assist (NAVA) while back in the TCU, where the Lowery family spends 18 hours a day working to get Kevin to wean off the NAVA in order to get used to a home ventilator one day.

During the process, Jennifer lost her job in March 2016 for needing to stay with Kevin at the hospital, and just six months later, Dave lost his job as well.

Regardless, when Kevin was spending time at his home away from home in Cardinal Glennon, both Jennifer and Dave anticipated the celebration of Kevin's birthdays. One year prior for his first birthday, the Lowery's expected to celebrate Kevin's birthday at Ranken Jordan, but because of the newfound issues he had to deal with in order to properly ventilate, and between moving back to Cardinal Glennon, they never had the chance to properly celebrate Kevin's first birthday.

"We did not get to do anything special for Kev's birthday because ultimately, he was just too sick."

History wouldn't repeat itself for 2017, though; last month, with Kevin's second birthday approaching, Cardinal Glennon staff treating Kevin decided to something special - something extra special - for Kevin's big number-two.

With the help of friends, family and hospital staff, the Lowery's gave Kevin what he hadn't had before - a Nautical-themed birthday festivity. Kevin's celebration as a newfound two-year-old was met with surprise messages-in-bottles, a gift he'll receive as he gets older.

"The hospital was amazing and we got to spend with our family and friends, and of course all of our favorite staff at the hospital," said Lowery.

PHOTOS 2-year-old Kevin Lowery through the years

And just a little over a week after celebrating his second birthday in style, Kevin got another taste of royalty when one of his PICU doctors, Dr. Andredone, put together another shindig for the two-year-old. Organizing 'Kevin's Minions', Dr. Andredone viewed her care team to be his own personal set of 'Minions' due to their diligent attention to detail during his stay at Cardinal Glennon.

Taking inspiration from the film series Despicable Me, 'Kevin's Minions' got its namesake from one of the three main 'Minions' characters, also named Kevin -- an appropriate coincidence. Dr. Andreone ordered 'Minions' shirts for her entire care team, while the big man on campus himself got a custom-made 'Minions' costume to celebrate again with his PICU team.

A new start

As Kevin ages, it's likely he may need to undergo further repair, including the relocation of his Scimitar Vein. But through the risk, the scares, the threats and the fears, Jennifer now views life through a pair of finely-fitted rose-tinted glasses.

"He is seriously the happiest child I have ever met in my life, and I am not just saying that because I am his mom," she joked. "If he can be so happy and positive, what is my excuse? He keeps pushing and we want to do the same."

Jennifer knows Kevin will get better. In fact, Kevin has reminded her of her faith, gaining the trust that God is always watching over her. And if you were to try and ask her how many things have gone absolutely, positively perfect - just the way it should have been - well, you wouldn't get an exact answer.

"I cannot tell you how many times through this journey that it was the perfect decision, or the perfect time, or the right doctor."

She's lost count, but she hasn't lost sight of her path towards beginning a new, more stable future. Although she admits her and Dave let their personal health slip during the past two years, they understand their focus on giving Kevin what he needed was priority.

"We are working to get our health back on track because we have to be healthy for Kevin," she said.

And yet, through all their hardships, there's still one thing that remains a pillar day in and day out: Paying it forward.

"We want so badly to give back to the place that has done so much for us," said Lowery.

--

In September, both Jennifer and Dave intend to participate in Cardinal Glennon's 'Sun Run', a 5K and one-mile fun run supporting Pediatrics at SSM Health Cardinal Glennon. 'Sun Run' begins and ends at Ballpark Village, running from 8:58 a.m. to 12 p.m on Saturday, September 24. For more information on the fun run, click here.

The Lowery's set up a team fundraising page, appropriately called 'Team SuperKev', on Cardinal Glennon's website. To donate or to join their team, click the link above. One-time and monthly donations are accepted.

If you're interested in learning more about Scimitar Syndrome, click here.

Follow Joel Hulsey on Twitter

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