Every year, 13 thousand babies are born in the U.S. with bronchopulmonary dysplasia, a chronic lung disease. That’s in addition to the two thousand infants who are afflicted with severe lung underdevelopment. Those figures are staggering—and the emotional toll for parents, even more dreadful.
Just ask Blish Connor, a former fashion exec turned brand consultant. Her son Cooper was born without the ability to oxygenate his own body and, when he turned nine months old, she and her husband made the difficult decision to take him off life support. Connor took that grief and did the unthinkable, revealing an inner strength far more formidable than most: She created something beautiful.
In 2007, Connor founded the Cooper Connor Endowed Fund for Pulmonary Research in partnership with Children's Mercy Hospital, located in her home base of Kansas City. "No doctor could really ever solve the mystery [of Cooper's condition],” says Connor. "So we thought, let's raise the money and, somewhere down the line, they will find a cure." Here at #VBGivesBack, we're proud to support this great charity—all month long, $10 from every veronicabeard.com purchase benefits the cause.
Blish Connor, photographed by Isaac Alongi
The Cooper Connor Endowed Fund for Pulmonary Research—the story behind it is quite personal…
Cooper Connor was our second child—he was born unable to oxygenate his own body and he was immediately transferred to Children's Mercy Hospital in Kansas City. They put him on an ECMO machine, which recirculates and re-oxygenates your blood. We were there for about two months and also visited several other hospitals around the country hoping for a cure. After he coded three times in the hospital following a virus, we eventually made the most difficult decision to remove him from life support when he was nine months old.
I knew we had to do something positive from the experience, to keep his memory alive. So we started the fund with the doctor who took such great care of him at the hospital, Dr. William Truog.
What is the fund's mission?
It is fully dedicated to pulmonary research. There is still no cure and no specific diagnosis for his inability to oxygenate. It was something he was born with and no doctor could ever really solve the mystery. So we thought, let's raise the money and, somewhere down the line, they will find a cure.
Any stats your can share about the importance of this cause?
About 13 thousand infants born in the US each year, most of whom are born very prematurely, develop the severe form of bronchopulmonary dysplasia (BPD) which our fund is also researching. There are another perhaps, two thousand infants born yearly in the US, mostly full term or close to full term infants, who have at birth (or develop afterward) evidence of severe lung underdevelopment. As a result these children end up in the same difficult situation as the very preterm infants do, needing months of prolonged hospitalization and more months or years of careful support at home with oxygen, medications and often home ventilation.
Why did you decide to pair with Children's Mercy, specifically?
Their commitment to research, our treatment there for many weeks and our appreciation for Dr. Truog were the main drivers. I believe research is the basis for treatment; it's the basis for trials; it's the basis for a cure. I think all healthcare has to be rooted in research. Dr. Truog has already done other successful trials, including one for cystic fibrosis and one for premature babies. And, also, Children's Mercy is our hometown hospital and we utilize it for our other children. You always want to cheer for the hometown hospital!
I believe research is the basis for treatment; it's the basis for trials;
it's the basis for a cure.
Could you share some examples of the fund's impact?
They've done clinical trials using hydrocortisone for severe pulmonary disorders and studies with surfactant. And from these trials, the doctors have seen successes as well as what doesn't work. They're not only looking at how to save lives but how to reduce suffering.
We were also able to build and dedicate a room off the NICU, the Cooper Connor Play Room, for families and siblings of the affected. There's a colorful mural, card games, board games... It puts a different spin on the hospital experience for siblings because it can be emotionally draining for everyone. Now, there's a glimpse of positivity.
When we hit the $500,000 mark. When we started the fund, I thought that maybe we would raise $50,000. It was important, too, for my other kids to see the work we put into this. When we cut the ribbon I was proud that Cooper’s siblings were there to celebrate his short life.
Advice for parents whose children may be similarly ill?
1. You have to be your own advocate; you have to be the advocate for your child. Keep asking questions—no matter what and no matter how silly you think they are.
2. Do your own research. That was really important for us. We researched doctors, hospitals... We made sure we crossed off every option we could.
3. Do not be afraid to ask for support. We had an incredible support network—friends, family, the community really rallied around us and still do. If you see someone else struggling at the hospital, don't be afraid to ask them what they might need. It might be that they just need to step away for a quick breather.
What do you hope people learn from your experience?
I’m not sure anyone likes talking about grief, especially when children and illness are involved. With the fundraising, we've tried to navigate our grief in a different way. I feel like we took this experience and made something positive out of something that will always be missing in our lives.