Preston family raises awareness for birth defect after tragic death of their newborn son

A family from Preston are raising international awareness of Congenital Diaphragmatic Hernia (CDH) by sharing their journey following the tragic death of their one-day old son, who was born with the birth defect in 2019.

On Monday (January 31), the Hince family shared the story of their son, Louis, on the CDH Radio Show, a weekly podcast run by CDH International, the world’s largest charity for Congenital Diaphragmatic Hernia.

CDH is a birth defect that affects over 52,000 children worldwide every year, and those born with it have only a 50 percent chance of survival, whilst those that do survive will face various medical problems throughout their lives.

During gestation, usually between 10-12 weeks, the diaphragm fails to fully form, often allowing abdominal organs to reach the chest cavity and restrict lung growth, and the cause of CDH is still unknown.

Sharing when she first learned of their son's condition, Demmi Hince said: "Louis' left sided CDH was diagnosed at my 20 weeks scan. 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.

"I had no idea what that meant. 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."

Following Louis's birth at St Mary's Hospital in Manchester, he was cared for at their Newborn Intensive Care Unit, where he tragically passed away aged only one day old.

His mum, Demmi explained: "Unfortunately, Louis passed away at 17 hours old. He never made it to surgery. NICU, 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. He passed on the 25th of May 2019."

Demmi continued: "It is coming up to 3 years since Louis died. Them 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."

As well as sharing their journey on the radio this week. the family will also be featured on the April 19th CDH Telethon, which is global Congenital Diaphragmatic Hernia Awareness Day.

Speaking of the support she received from CDH International, Demmi said : "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."

According to CDH International, which is headquartered in North Carolina, Congenital Diaphragmatic Hernia is as common as Cystic Fibrosis and Spina Bifida but has little awareness and very little funding.

CDH International aims to support affected families, facilitate research, and raise awareness for Congenital Diaphragmatic Hernia, and has helped over 6500 CDH families in all 50 US states and 74 countries, through patient services, raising awareness and funding, and participating in global research.

If you would like to learn more about CDH or to make a donation in honor of Louis Hince, visit their CDH International's website here.