Join us this week as Demi Hince shares her son’s journey after he was diagnosed with CDH.
Tune in to at 6:00 pm EST, February 1, 2022, to https://www.blogtalkradio.com/cdh/2022/02/01/february-1-2022-guests–demmi-hince.
Listen to archives of the radio show at http://www.cdhradio.org.
Louis’ left sided CDH was diagnosed at his 20-week scan. His mom, Demmi, shares “I was so excited to see him on the screen again. The sonographer took a long time to scan and then she had to go and get another lady in the room, it was then my heart sank, I knew something wasn’t good. I knew he was alive as I could feel him wriggling, but knew we were about to get bad news. And that’s when they said them 3 letters CDH.”
The family had no idea what CDH meant or what the journey would like like ahead of them. Demmi shares, “I did a lot of googling once I got home. It broke my heart into millions of pieces, but I had to stay strong for my husband and two older boys. My pregnancy was difficult near to the end. I had polyhydramnios, so I was very uncomfortable and had lots of reduced movement episodes. Louis made his grand arrival via forceps in May 2019.”
Unfortunately, Louis never made it to his CDH repair surgery. Louis passed away at 17 hours old. When we asked Demmi about the NICU, she shares, “I don’t remember much other than beeping machines, and little Louis in his incubator and all the tubes. It was a scary place, a place I never want to go again. The nurses were so kind and caring. Louis’ consultant kept us updated at all times. I cannot fault them for what they did for us and Louis. They tried to get him into the transporter incubator to another hospital for ECMO but he had given up his fight, he didn’t want to be there. We had to make the hardest decision of our lives and turn off his life support machine and let him go to sleep forever. That day changed me forever.” Louis passed away on the 25th of May 2019.
This May, marks three years since Louis left this earth. Demmi shares, “these 3 years have been the hardest of my life. I’ve never felt pain like it. I carry on and be strong for Louis and my alive children. Grief they say gets harder as the years go on. There are times where I just want to be in bed all day and not move. And other times where I’m okay and have a good day. Louis sent us a precious rainbow baby girl who is 1 and a half. She has helped us all so much. She will never know. And also, his older brothers help us daily without even knowing it.”
CDH International continues to help Demmi through her CDH journey. “I like to see all their posts on Facebook and it is great to connect to other CDH families whether that be in the UK or elsewhere. We are all one big family.”
If you are interested in sharing your CDH journey, visit https://cdhi.org/cdhstory/ for information.