By Elizabeth M. Collins, SoldiersApril 14, 2016
FORT MEADE, Md. (Army News Service, April 13, 2016) -- For the past decade, the McIntyre-Brewer family has needed to be strong -- strong, resilient and hopeful. Strong as an Army family as Capt. Steven Brewer deployed for a total of 36 months. And strong emotionally as Brewer and his wife, Chelle, faced every parent's worst nightmare.
First, they lost one twin, Rory, six months into Chelle's pregnancy. Their unborn daughter, Lorelei, almost died as well, but somehow they made it through the rest of that extremely high-risk pregnancy. Then they learned they might still lose Lorelei.
HALF A HEART
She was born with only half her heart, a condition known as hypoplastic left heart syndrome. The size of a walnut, her heart was missing the left ventricle and the mitral valve, and her aorta was too small. She also, they would learn, had a host of other health problems, including Harlequin Syndrome and a life-threatening allergy to petroleum jelly and plastic products.
Doctors immediately rushed the newborn Lorelei to Children's Hospital of Philadelphia, where she underwent her first open heart surgery. She had a second at 3 months, a third at 3 years and will likely have a fourth sometime in the next year or two.
At only age 10, she has had more than 20 operations and procedures. Even the most routine can be life threatening. Lorelei's heart stopped during a hearth catheterization last summer, for example, and she woke up from a sedated brain MRI temporarily blinded.
As a baby, her oxygen levels dropped to dangerously low or nonexistent levels, leaving her brain-damaged and with autism-like symptoms such as a tendency to wander. Scarring from intubations has led to interstitial lung disease and Lorelei suffers from heavy facial tics and seizures. Most recently, she had a small stroke. She's waiting for a service dog to aid her in daily life and comfort her during medical procedures.
"She's a miracle for sure," said Chelle, explaining that there is no cure. "People will ask me, 'Can she get a new heart? I keep on saying, 'That's not fixing it.' … People will look at her and say, 'She looks fine.' … It's frustrating for me and it's frustrating for her. Even now she's having a hard time communicating. She just can't think straight."
After that third open heart surgery, Lorelei's lungs collapsed, leaving her drowning in fluid. Doctors put in extra tubes and they also tried a compression heart pillow. As Lorelei explained, holding a pillow "super tight" to the chest after open heart surgery not only helps reduce pain for patients as they cough, "it helps to get out all of the fluids from your lungs." The pillow, however, was Lorelei's great-grandfather's and it was just too big for a tiny, 3-year-old girl.
"It took two months of just trying to get her lungs to build up again and we still had residual issues," said Chelle. "If she has a (heart catheterization), her lungs tend to fill up with fluid and she has to stay overnight no matter what."
Lorelei has never forgotten the pain. When she was 5, she told her mother she wanted to learn how to sew. She wanted to make compression heart pillows for other pediatric cardiology patients.
"I don't want other kids to feel the pain that I felt," she said on the Dr. Oz show last year, "not only in this heart, but in your heart for love."
Heart Hugs was born.
Today, Lorelei and her helpers have distributed more than 2,500 pillows. Lorelei also makes ornament-sized memorial heart pillows for families that have lost a child. That number is tragically high. Chelle estimates that about five children the family knows personally pass away each month.
"It's a way for her to cope," said Chelle. "She writes letters to each of the families. ... She just lets them know that she will always have them in her heart.
"I find it scary. I don't really know (how Lorelei sees it) and I don't want to probe because I don't want to create an issue. I have a recurring dream that I'm missing half of my heart and that I'm dying. I just can't even imagine what it's like for Lorelei. ... There will be no happy ending to our story," Chelle continued, adding that she's so grateful that Brewer is giving up time with Lorelei so she can stay home and care for her and homeschool the kids as part of a co-op with other licensed educators.
"Some days are better than others," said Brewer. "You have to carry on with daily life. Most of the time, we are just dealing with normal issues: not cleaning her room, doing homework, feeding the cat, etcetera. But of course, there is also a constant monitoring of oxygen, how she feels, do her nail beds look too blue, having medicine on hand. Sometimes it hits me hard and I get really down, but usually I am just happy to have her in my life. We are so fortunate to have had so many great doctors and nurses taking care of her. Just like we say for so many of our troops returning from combat, our perspective on life is now different. That doesn't mean it's bad; it's just our 'new normal.'"
The McIntyre-Brewer family is part of the Exceptional Family Member Program, although they are so "exceptionally exceptional," according to Chelle, that they have run into difficulties with TRICARE and local providers. In fact, the family can't be stationed with Brewer because they need to stay near CHOP.
"The system needs to be revamped to include diagnoses that are not within the specific framework of what exists," said Chelle. "The Army has the right intentions. … Our situation is hard. We do not fit a mold. There are a lot of complex kids out there that can move from place to place and receive care at different hospitals. We tried that and Lorelei's health suffered greatly. We recognize our situation is unique … and we're very proud of the fact that he serves."
A prior enlisted Soldier with a civilian background in mental health and substance abuse, Brewer rejoined the Army in 2007 as a medical service corps officer. He wanted to do his part to help fight terrorism and, as Chelle said, the family had maxed out their civilian health insurance for Lorelei within a year of her birth. Brewer is now a company commander at Kirk U.S. Army Health Clinic at Aberdeen Proving Ground, Maryland,
"Steve's commands have been wonderful," Chelle said. For example, "When he was in (Officer Candidate School), Lorelei had what could most easily be described as a heart attack. … The commander was more than willing to send Steve home. I told him that wasn't necessary because I had things squared away, but asked if I could speak with him. He drove out to the field and found Steve so he could do just that."
While Lorelei's health regularly terrifies her parents, she prefers to concentrate on others, on those bereaved families, on the children she helps with her pillows and on her best friend, Cora. Although the two only met in person in 2014 on the Dr. Oz show, they were born just a month apart at the same hospital and with the same heart defect. Lorelei is with Cora for every appointment, every procedure.
Among other awards, Lorelei has been honored for her work by the Dr. Oz show as an Everyday Health Hero, by Kohl's Cares and now by Operation Homefront as the 2016 Military Child of the Year for the Army. She is receiving a $10,000 scholarship in the April 14 ceremony in Washington, D.C., which she will save for her dream school, Susquehanna University. She wants to study writing.
"The children in our military families demonstrate the best in our society and our … award recipients are extraordinary representatives of this spirit of selfless service," said retired Air Force Brig. Gen. John I. Pray Jr., president and CEO of Operation Homefront, in a statement. "They perform at a very high level both in and out of school while simultaneously dealing with parental deployments, recurring relocations and other challenges associated with military life."
ALL IN THE FAMILY
It runs in the family. Lorelei's older brother, Cavan, 14, who is also a writer with an impressive list of awards, received the honor in 2015 for his work with veterans and wounded warriors. When Cavan was 8, he visited a local veterans' hospital with his Cub Scout troop where he bonded with a Korea vet named Wade Holder. Holder invited Cavan to come back and play checkers while Cavan noticed that Holder and a lot of other veterans lacked some basic necessities.
"A lot of them were cold and stuff because they didn't have socks and other necessary items," Cavan explained. "Then we just kept coming back and bringing items and we got churches to donate."
SOCKS FOR VETS
"That's what started (Socks for Vets)," remembered Chelle. "It was this one guy who reached out to Cavan when Cavan was feeling really, really down because Steve was deployed. People just sent volumes of this stuff to us and … it just got bigger and bigger. Cavan just sat there and he was like a little sweatshop worker, just clicking away with his little socks and putting them away."
To date, they've helped almost 10,000 veterans and the McIntyre-Brewers even started making sock monkeys to give out to lower limb amputees who couldn't use socks. During one of his hospital visits, this time to Walter Reed National Military Medical Center, Cavan met Marine Cpl. Mark Fidler, who is a below-the-hip amputee. It was another instant bond, this time for the whole family -- Fidler is now the kids' adopted uncle and godfather. Together, Fidler and Lorelei are known as the "halfsies." The man with half a body and the girl with half a heart just "get" each other, said Chelle.
Cavan wanted to help Fidler rediscover his love of nature sports, so he started raising and training goats to act as pack animals for wounded warriors on hikes. In addition, he delivers backpacks full of nonperishable food and toiletries to homeless veterans.
He does it, he said, because vets and wounded warriors "are like family." Cavan has conditions called pectus excavatum and pectus carinatum, which mean his breastbone is slightly misshapen, although doctors say it shouldn't impede his dream of joining the Marine Corps one day and continuing a family tradition of service that dates back to the Revolutionary War.
Both kids receive high grades and are involved in Scouts and advocacy work. "Every single time somebody has a request, the kids aren't like, 'I don't know if I can do that,'" said Chelle. "They're like, 'Okay. I'll see what I can do.' I just kind of encourage them.
"It's been a really big blessing for me to have them home schooled because I can work on everything: Accounting, sewing, making sure we budget enough because the money that we use comes out of Steve's income. … They have to make sure that they're prepared and they have to do all of the planning for the events that they do."
Chelle was herself the 2008 Military Spouse of the Year and was awarded the Presidential Citizens Medal by President Barack Obama in 2012 for her work advocating for wounded warriors, high-risk Army families and special needs families.
"One of the things I noticed about my wife when we first met was how open and caring she was," said Brewer. "It's what drew me to her (and she was cute). … The kids have grown up with that kind of activity being just a normal part of their lives. We also encourage questions and give honest answers, even if it isn't pleasant, so I think that helped them to see problems and ask what they could do to help."
In addition to Cavan and Lorelei, the McIntyre-Brewers have a 3-year-old son, Killian, who also has a heart defect, double midmuscular ventricular septal defect -- basically two holes in his heart. He's doing great, however, and the last time doctors listened to his heart it sounded normal. His parents joked that they expect him to receive the Military Child of the Year award next year.
"I said, 'No losers in this house!' Just kidding," Brewer teased. "I think children are typically kind people who have an instructive empathy for others. If they are given room to flourish and grow that innate kindness, they are encouraged to do more for others. But opportunity can only be one part of the equation. There is just something in these kids that makes them care for others very deeply. Their compassion motivates me to want to do more, rather than the other way around.
"I would be proud of them no matter what," he continued. "Kids need to know that what they do is important, even when it isn't recognized with awards. … But there is definitely a swell of pride to see them get an award like this in back-to-back years."
And for any child who wonders if he or she can make a difference, Lorelei has one piece of advice (based on one of her favorite cartoons): "Do your best and forget the rest."