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How the Blues helped my family through our son's CDH diagnosis

Blues fan Davis Martin shares personal story of how his family is living with son's CDH in COVID-19 pandemic

by Davis Martin / Special contributor to stlouisbues.com

Davis Martin is a dedicated St. Louis Blues fan and Anheuser-Busch executive whose son, Albert, had a birth defect known as Congenital Diaphragmatic Hernia when he was born prematurely in 2015.

Albert is now five years old but because he is immunocompromised, he and his family face additional challenges during the COVID-19 pandemic. To help raise awareness for the condition, Enterprise Center will turn its lights pink, blue and yellow on CDH Awareness Day on Sunday, April 19.

Davis shared his own personal story about CDH with stlouisblues.com.

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Good Friday of 2020 marked the five-year anniversary of the date when my wife, Stacy, and I - upon having her 20-week ultrasound - discovered that our child had a birth defect known as Congenital Diaphragmatic Hernia. "You're going to want to write this down," the doctor said, which are words you're never quite prepared to hear. It's the first time Stacy and I had ever heard the words Congenital Diaphragmatic Hernia uttered.

CDH, as it turns out, is a condition where the diaphragm doesn't fully form. As a result, the organs that would normally be contained in the gut (stomach, liver, pancreas, etc.) end up floating into the chest cavity and developing wherever they can find the room, often encroaching on the space normally occupied by the lungs. This significantly impairs the development of the lungs, and thus the child's ability to breathe once it's delivered and forced to use oxygen for the first time. CDH is as common as cystic fibrosis and spina bifida, yet seems to have far less awareness.

My son, Albert, was born prematurely at St. Mary's Hospital in July of 2015. He was immediately placed in an ambulance and rushed to the NICU at Cardinal Glennon; a place he would call home for the next seven-and-a-half months. Given the numerous complexities he faced, his chance of survival was slim, and being premature only worsened those odds. Blues hockey provided a great escape for me and my wife. We needed something uplifting to hold onto, and the Blues were it. Right before he was born, the team had just finished first in the division and were a No. 2 seed in the Western Conference. While they exited early in the Stanley Cup Playoffs that season, we had a sense of optimism for not only Albert, but the Blues fortunes as well.

Soon began the start of the 2015-16 season and Albert was about one-third of the way through his residency at the NICU. At this point he had had numerous surgical procedures in order to push his abdominal organs into their rightful place, close up his diaphragm, and give his lungs the proper time to develop. This is easier said than done. He was on a ventilator for three months and his prognosis changed by the day. There were some very dark days. Seeing your child fight for his life over an extended period of time is something that's hard to relate to unless you've had to do it yourself. There's a PTSD element to an experience like this that you really never shake. He was released from the hospital on Leap Day of 2016.

Starting the next day, the Blues would go 10-2-0 in March to solidify their spot in the playoffs. I was able to be at Enterprise Center to take in the Game 7 victory over the Chicago Blackhawks in the first round of the playoffs that season - the slaying of the proverbial dragon. I'd never felt the building vibrate like it did that night. Could it be that this could be the year? It wasn't meant to be, but one could sense something palatable that good things would soon be happening for this team.

The Blues always played an important part in Albert's experience in the NICU. His nurses were fervent Blues fans, and often donned Blues gear when working their magic. Some were even season ticket holders. Upon my wife and I meeting Brett Hull and Chris Pronger at a couple of different Blues events that season, both offered to sign photos and scribe words of encouragement for our son. Those pieces were fixtures in his room at the NICU, and are prominently featured in his bedroom today.

Without stating the obvious, 2019 was magical season that St. Louisans had dreamt of for generations. Watching Game 7 at home with my son, daughter and wife was an ethereal experience. The parallels of the Blues journey and my son's experience weren't lost on us. Both had faced seemingly insurmountable challenges only to persevere in the end. Every day when we see our son we're in awe of his fighting spirit. Similar to many other survivors of CDH, the complexities that come with this defect still affect our son today and will for some time. His spirit to beat the odds will forever be present.

The Coronavirus pandemic is a reminder of the frailty of life. Having a son who is immunocompromised makes times like these resonate even more. It's an opportunity to heighten awareness for CDH across the St. Louis region, the state of Missouri and beyond. Governor Parson has proclaimed April 2020 to be a month that citizens of Missouri raise awareness of Congenital Diaphragmatic Hernia. We're grateful to the St. Louis Blues organization for helping increase the visibility and awareness of this condition as well.

We want to thank the healthcare workers at St. Mary's, Cardinal Glennon and St. Louis Children's Hospital for the care they have given our son. We encourage Blues fans to learn more about CDH by visiting cdhi.org. Donations can be made to CDH International by clicking here.

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