7th Annual Cadan’s Carnival For CDH Awareness Taking Place at Quincy Knights of Columbus – an Interview With Tiffany Frericks
The 7th annual Cadan's Carnival Halloween event will take place October 18 at the Quincy Knights of Columbus. The carnival is held in memory of Cadan Christopher Frericks, son of Tiffany and Rome Frericks, who passed away only weeks after his birth due to complications from Congenital Diaphragmatic Hernia (CDH), a birth defect where the diaphragm does not properly form, allowing the abdominal organs to move up into the chest. The carnival is held in Cadan's honor, and raises awareness of CDH and funds for CDH research. Cadan's mom, Tiffany, was kind enough to give us a few moments of her time for an interview.
Please tell us about Cadan, and your story.
We found out about Cadan during our routine ultrasound at 23 weeks. My doctor simply told me that the baby's stomach was above the diaphragm and that he (although we didn't know the sex at the time) would need to be born in a hospital with a NICU and he would need surgery after he was born. I had no idea what it was he had, I wasn't given a name, nor did I know the severity of it. I went home, got online and did some research where I found CDH and I called the nurse back to ask if this was what my baby had. She said yes and I broke down in tears because then I realized that there was a very good chance our baby was not going to make it.
Cadan was born at Barnes-Jewish hospital. My husband said he heard a faint cry when he was born, although I did not hear it. They stabilized him (there were around 20 doctors/nurses in the delivery room) and rushed him to the NICU. I was allowed to briefly look at him and tell him that his mommy was here before they took him away. I was not able to see him again until the next morning because they were busy working on him all night. He did well for the first couple of days, at this point we could sit with him, but we couldn't talk to him or touch him. They need very low stimulation or else it can send their stats downhill. Unfortunately, even low stimulation did not work for Cadan and after a couple of days they had to put him on what is called an ECMO machine (which is a heart and lung bypass machine). After they put him on the ECMO, we were able to have the lights on and we were able to talk to him and touch him. Which is what we did day in and day out. We read him books, rubbed his little head, touched his feet and hands, just let him know that we were there. It was just a waiting game at that point, they wanted to wean him down from the ECMO until he was doing more of the breathing on his own and then do surgery to put his organs back where they belonged and patch the diaphragm. Unfortunately they never got the chance because two weeks after he was born, the ECMO machine for some reason quit working. They had to take him off of it and it was just too hard on his little body. His organs slowly quit working and about 10 hours after the machine quit, the doctor told us he had one more medication he could try to get his kidney's to start working again, but it didn't work. At that point we had to make the decision to let him go. They unhooked him from the vent and my husband and I were able to hold him for the first and last time before they turned off all the machines and we said goodbye. He died in my arms.
How did the idea of Cadan's Carnival come about?
After Cadan died, we knew we wanted to do something, but we didn't know what. There was so little knowledge of CDH, I even had to inform my local nurses of what it was and what the implications were. Only one nurse seemed to know about it. Even though CDH is as common as cystic fibrosis and more common than muscular dystrophy, people never hear about it until they are diagnosed. Furthermore, the survival rates of these babies are low. Only 50% of CDH babies survive to see their first birthday, the treatment options are all experimental, what works for one baby doesn't always work for others. There just wasn't enough attention being given to this birth defect. We wanted to change that as much as we could. Cadan changed our lives forever, we wanted his life to have an impact on others as well.
At the first committee meeting, we tossed out ideas of different fundraisers, but all of them had already been done (a walk, a golf outing, etc.). One of my committee members said "What about a kids carnival? Nothing like that has ever been done, we could call it "Cadan's Carnival!" I said "Cadan's Carnival" out loud and loved it! Cadan's Carnival was born on that night.
How has Cadan's Carnival changed since its inception?
The basic premise is the same, everything we have is geared towards kids, but we have added and subtracted some things. We have added new inflatables, the paintball shooting and drug dog demonstration, the Raptor Rehabilitation Center's "Birds of Prey" and their snake, and the petting zoo over the years. This year we made some minor changes based on what was popular and what wasn't as popular last year. We have different inflatables and added a third one this year and we have also taken out some of the old games and added new, more challenging games for the older kids as well as Home Depot's Building Workshop for Kids. We just keep trying to modify it bit by bit so that kids get the ultimate enjoyment out of the day. We have always kept the Halloween aspect of it though, kids LOVE being able to dress up in their costumes.
Since you started having the fundraiser, has there been anything surprising, or unexpected, that you've learned?
I have been continually amazed by the generosity and kindness of people in the area. I will have people call me out of the blue after seeing our flyer and offer to donate to the Carnival. We have major sponsors, such as KHQA, Reed Promotional Media, Pepsi, Laser Images, Hy-Vee, C&S Construction, Geise Jewel Box, ADM, Quincy Medical Group - which year after year give us unconditional support and help to make this event happen. It just wouldn't be possible without their support. Not only that, but the event requires around 130 volunteers and every year people step up. I am most amazed with my committee. Most of them are my friends, but some are just people that I kind of knew in the past or have gotten to know because we both have been impacted by CDH, but they just blow me away every year with their dedication to the cause. I know why I work so hard year after year, because it is a way to honor Cadan and keep other families from going through what we went through, but they just do it because they are wonderful people.
What kind of progress is being made and has been made regarding CDH research?
The research found support for the role of chromosomal anomalies in CDH and provide a set of genes that seem to be involved in diaphragm development and therefore need to be researched for further analysis of the causes of CDH. Our money has also allowed St. Louis Children's Hospital to be a part of the National Registry for CDH babies, which will help to further research happening at other institutions as well. A hospital that has a large caseload of CDH babies, usually only has 12-14 CDH babies a year, so if they study their babies only they have a very small population. This National Registry is ongoing and St. Louis became a part of it after Cadan. Furthermore, Dr. Barb Warner told me last year that they thought of me because they needed some money to do some follow up research on CDH babies to look at their outcomes and they went to the foundation and of course, asked for the money that was raised by the Carnival. Dr. Brad Warner (yes, they are married and both doctors took care of Cadan while he was there) told us last year that the survival rates of CDH babies at St. Louis Children's Hospital have doubled since Cadan was there almost five years ago and he credits it largely to the focus that Cadan and the Carnival give him and his staff to these babies. This Carnival truly is saving babies lives. When I see CDH babies at the Carnival, I can't help but feel that they are there in part because of Cadan's life and all we have done since then.
Anything else you would like to add?
Just a huge THANK YOU to everyone that supports us and comes to the Carnival every year, they truly are making a difference!