Our very own Kayla Tiller, LMSW is sharing the story of her daughter, Briar, and raising awareness for both Congenital Heart Defects and the importance for parents of medically needy children to care for their own mental health while navigating an exhausting and intimidating journey.
We welcomed our daughter, Briar Grace into our hearts and home on July 1, 2020 amidst the throws of the pandemic. She was born in a local hospital with a short NICU stay, then we transitioned home to do as all parents do and learned to parent through baptism by fire. As the next few weeks went on, Briar began to have a slew of feeding concerns, such as fussiness at the bottle and taking a very long time to feed. As new parents, we took several trips to the Pediatrician to try to ease her distress (and ours!).
On August 5th 2020, we ended up at Texas Children’s Hospital’s in The Woodlands. Because it was during the Pandemic, my husband, Adam, stayed in the car while I went in. Briar was checked in and was promptly found to be hypothermic.
I will never forget the look on her face when the nurse alerted me that she would be taking Briar back and that there would be many people. I looked at the nurse and said “You're coding my baby, aren't you?”. She simply looked at me as to not say yes, but also not deny the reality of the situation as she was rushed back.
At some point in the chaos, a Cardiologist found me (and my husband via phone) to inform us that Briar had something called the Taussig-Bing Anomaly, a rare cyanotic congenital heart defect.
Congenital Heart Defects (CHD) are the most common birth defect affecting 1% of every 40,000 births each year in North America. Prior to this moment this statistic never once crossed my mind.
On August 7th, at one month old and just two days after she was diagnosed, Briar underwent a 13 hour open heart surgery. Ups and downs of her recovery followed until she was stable enough to return home towards the end of the August. For that month we watched our daughter fight for her life. We talked to Physicians, Surgeons, Social Workers, Nurses, and everyone in between. We stayed at a nearby hotel because we were over an hour away from home and could not be together due to the Pandemic restrictions at the time. My husband Adam and I switched off 24 hour periods to be with our Daughter. While our daughter fought, we were on autopilot. We didn't feel we had an option outside of autopilot.
In the months that followed the whirlwind of the hospital, Adam and I both learned a lesson that will stay with us forever. We returned home and transitioned to our new normal. For a small amount of time that meant tube feedings, tracking intake, frequent doctors visits, etc. Our reality was such that we also had to return to work at our own health care jobs. So we did; and slowly we both started to see a decline in our mental health. Small stressors were exhausting, the constant beeping of heart monitors at work triggered panic and anxiety, and crying spells became more frequent. We tried to be okay, but the truth is we were far from it. We were trying to do our best and put ourselves last. The problem was that "wearing ourselves last" as a badge of honor did more harm than good to ourselves, our daughter, and our entire family system.
The GOOD NEWS is that we both sought help for our mental health. Adam first and then me. To my surprise, even as a helping professional myself, it helped tremendously. We began to laugh more. We practiced gratitude. We didn't hold ourselves to impossible standards of parenthood. I allowed myself to not fret over every ounce of formula Briar did or didn't eat. Looking back, I now know that Adam and I were both suffering symptoms of Acute Stress Disorder (short-term PTSD symptoms), something that is not uncommon after a traumatic event.
We are incredibly thankful to celebrate our daughter's recovery. She is now a spunky full of life 3 year old with the attitude to prove thanks to many prayers and modern medicine. We thank HER just as much for being our push to have our mental health at a place of wholeness and wellness.
If you a fellow NICU survivor, are parenting a child with CHD, or trying to navigate and absorb your child's own unexpected diagnosis, we would love to help. Click "Contact Now" to set up a consultation.
This blog cannot be written without a sincere “Thank You” to Briar’s care team at Texas Children’s Hospital. Included but not limited are:
Oluwatosin Fatusin, MD, MPH
Michiaki Imamura, MD
J. Chris Wilkinson, MD
Barbara-Jo Achuff, MD, FAAP
Every Single Nurse in the TCH Medical Center Cardiac ICU and step down unit.
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