Meet Clara Hardy, an 8th grader at Arts Based School in Winston-Salem. She is a creative, kind, intelligent, strong and generous 13-year-old who has beautifully demonstrated what it means to shine brightly in the face of the most difficult life experiences imaginable. When I think of Clara, I think of miracles. I think of a courageous warrior. I think of resilience personified. I first met Clara in the spring of 2011 in the Pediatric Intensive Care Unit (PICU) at Brenner Children’s Hospital when she was just a few weeks old. Clara was accompanied by an entourage of medical personnel and myriad monitors, tubes and wires; and yet, amid the flurry of activity, she slept soundly in the safety of her mother’s arms. I walked in on a good moment – there had been and would continue to be many scary, challenging moments, hours and days across the 78 days she spent fighting for her life.
“I have to take risks to meet a challenge.” ~ Clara
CDH
Chrissy and Robert Hardy entered their 18-week gender reveal appointment giddy with excitement, but the exhilaration of the news that Baby Girl Hardy would soon make her debut was quickly shattered when the ultrasound revealed an abnormality the doctor suspected was a herniated diaphragm. A follow up visit days later confirmed the worst. She had a severe CDH (Congenital Diaphragmatic Hernia) – a birth defect that occurs in one of every 2,500 births where the baby’s diaphragm fails to close properly, leaving a large hole inside that allows organs to migrate from the abdomen to the upper chest, severely restricting the growth and development of the lungs. Chrissy and Robert were told that their daughter’s entire stomach was in her chest cavity, which also displaced her heart – another serious concern. It would be extremely complex to treat, requiring surgical repair soon after birth and a long course of intensive care. Depending on the severity of the defect, it could be fatal. As Chrissy shared in a blog post that day, “We are reeling from the news. It’s hard to believe how much we already love her and how much our hearts are breaking.”
“I was born with a condition called congenital diaphragmatic hernia and spent the first three months of my life in the hospital.” ~ Clara
Clara Mae
Like many expectant parents, Chrissy and Robert poured over baby name options. They wanted a name as special as their unborn daughter and one that encompassed all they hoped and desired for her. She already sported a strong last name that would serve her well through all of the devastatingly hard parts of this life. Hardy – capable of enduring hardship; requiring great physical courage. Clara means bright and clear. Mae means beloved. As Chrissy said, “I love the way it [Clara] sounds when we say it and can’t wait to whisper it into her ear.” At 5:07 p.m. on March 23, 2011, Clara Mae Hardy (all 8lbs, 4oz of her) entered the world and tried her name on for size – it fit perfectly! “Hers was not an easy start to life outside the womb.” Chrissy and Robert were able to hear her soft cries for a few brief moments before, “Clara was whisked away to be intubated, ventilated and stabilized in the Forsyth (Novant) NICU before the Brenner’s transport team took her to her temporary home in the Baptist (Atrium) NICU.” The marathon commenced. (Blog post, Chrissy)
“My life’s challenges never stop me from doing things and going places.” ~ Clara
ECMO
Clara was not responding favorably to the treatments meant to increase the function of her heart and lungs, and the medical team made the decision to put Clara on ECMO (Extracorporeal Membrane Oxygenation) – a heart and lung bypass machine. Whereas a ventilator moves air in and out of the lungs when a patient is unable to get enough oxygen on their own, an ECMO circulates blood through a machine to remove carbon dioxide and add oxygen, allowing the heart and lungs an opportunity to rest and get stronger. It was a scary option because it was a last resort treatment – most babies who did not survive CDH spent time on ECMO. As Clara’s parents wisely realized, it was also a beautiful option because it kept Clara alive and gave her the opportunity to heal and recover and “store up for fighting the battles she still had ahead of her.” For Robert and Chrissy, ECMO spelled HOPE. And, after 22 days on ECMO, Clara was well enough to return to the NICU – one step closer to going home!
“I still have a scar, and I know that it means I have overcome something hard, and it makes me stronger.” ~ Clara
Reherniation
When Clara turned four, she began presenting symptoms that aligned with a reherniation of the diaphragm. A repair surgery would be necessary and, while it was not as serious as her initial repair (and no ECMO this time), it was still major surgery. Gratefully, it could be done laparoscopically which increased the tedious, time intensive nature of the repair, but it would make Clara’s recovery much easier. As with the first surgery when she was just eight days old, the CDH roller coaster ride on the other side of surgery was full of highs and lows. Clara’s pain was intense and so were the pain management medications; nasal cannulas were required for oxygen support, her breathing was shallow and her heart rate was high but, all in all, she was progressing as the doctors expected on the 24-hour post-op timeline. It was the familiar two steps forward, one step back CDH dance for a couple of days; and five days later, Clara waved goodbye to the children on the rooftop playground and her medical team and headed home.
“I distinctly remember the playground, enclosed on the roof where I went every day and, eventually, I made it up the play structure!
I overcame a great physical challenge, and I realized I could do anything I put my mind to.” ~ Clara
Heartbreak
Clara’s world was knocked completely off course in the summer of 2023 with the news that it was her beloved mother who would be the one battling for her life this time. After a couple of weeks feeling “less than,” Chrissy’s symptoms presented with a vengeance. A visit to the ED was warranted, and bloodwork not only revealed a case of COVID but that she had “basically no platelets or hemoglobin and the white and red blood cells were behaving in ways to indicate leukemia.” (Chrissy’s Blog post, 6/1/2023). She was immediately transferred to the Cancer Center at Baptist Hospital where a bone marrow biopsy confirmed that she had Acute Myeloid Leukemia. With Robert, Clara, Eloise (Clara’s younger sister) and Sweet Mama (Chrissy’s mom) as her biggest cheerleaders, Chrissy was committed to fight hard! She was told AML was treatable and curable – there was every reason to hope. Everyone who knew Chrissy was 100% confident she would do whatever it took for however long it took to reign victorious. As Chrissy said, “I WILL DESTROY IT!” At the two-week mark, a second bone marrow biopsy revealed that the chemotherapy was not working, and a more aggressive chemo plan was in order. “The goal is still cure and cure is still possible,” Chrissy shared. She fought hard and clung to every hope even as she took her final breath on June 20th, 2023 when “Chrissy left this world peacefully, surrounded by overwhelming love.” (Blog post, Robert).
“My story is not simple, and my life has not gone as planned; but I have made it through, and it has made me stronger.” ~ Clara
Caps for NICU Babies
Clara has been involved in service projects across the years for as long as she can remember, helping those in need and brightening their day. She is an avid reader, inquisitive, lover of nature, incredible writer like her mother (Chrissy was my graduate student a long time ago, so I know this for sure), physically fearless, loving, selfless and social. She has never met a stranger. At the recent Ardmore Art Walk, Clara set up a booth on the sidewalk (in front of her art teacher’s home) to sell items she had made – earrings and necklaces, notecards boasting gorgeous photos by Clara and crocheted items. I was not surprised to learn Clara taught herself to crochet from a YouTube video. This teenager is smart! She saw an opportunity to use her crocheting talent to help spread love and encouragement to the NICU babies and their parents by making tiny caps – a way to play “dress up” when the top of the head is about the only part of the infant’s body free from life-saving/life-giving apparatuses. Wires, IVs, nasal cannulas, lines and tubes are something Clara is familiar with, and she knows firsthand how impactful it is to be the recipient of a kind gesture by someone who understands exactly what you are going through. Clara was given generous donations from passersby to purchase yarn to make more caps – lots and lots of caps for the NICU babies. Word spread across the neighborhood, and throughout the day, Clara was continually asked, “Are you the NICU baby cap maker?” YES! I can only imagine there will be plenty of smiles and a few tears of gratitude from those anxious NICU parents when they learn the tiny cap of hope on their baby’s head was lovingly made by Clara, a former NICU/PICU baby who defied the odds with her spirit of tenacity and strong desire to fight for her life – and she won!
“I’m making hats for babies that have been hospitalized for various reasons. I was born with CDH. Any tips for yarn are gratefully accepted. Thank you. Love, Clara”
