Join us this week as Haylee Densmore shares her son’s journey on the CDH Radio Show, after he was diagnosed with CDH.
Tune in at 6:00 pm EST, November 23, 2021 at https://www.blogtalkradio.com/cdh/2021/11/23/november-23-2021-guests–haylee-and-johnathan-densmore-parents-of-owen.
Listen to archives of the radio show at http://www.cdhradio.org.
Haylee was expecting her first baby and the pregnancy was going very well. It wasn’t until her 27th week appointment her world was shaken. Haylee shares, “My pregnancy leading up to the diagnosis was magical, I was in love with being pregnant and the idea of how as a family we were going to have so much fun and go on many adventures. My husband had just left for an assignment in the military, that would keep him away for a couple months, but it was okay, because everything was just fine with our baby. I was 27 weeks pregnant going in for my normal anatomy scan to confirm the pregnancy was moving in the right direction. One never thinks it will happen to themselves until it does. When the words Congenital Diaphragmatic Hernia was spoken to me for the very first time my world turned upside down. The first thing in that moment I thought was, how do I protect my baby boy.”
Haylee took charge to learn everything she could about CDH and prepare for Owen’s arrival. Haylee shares with us, “Owen was delivered with a high level NICU team waiting for him to be delivered, as soon as he entered this world, they took him away within seconds to assess how critical his CDH actually was. He received ECMO within 24 hours of being alive, because the NICU had reached all life sustaining measures to keep him alive. So many additional health issues come along with CDH, and the team was not able to stabilize him enough for him handle surgery.”
It would be several weeks, on December 14th, before Owen was stable enough for the surgical team to repair his diaphragmatic hernia. Haylee shares, “when they take your child away from you once again for another operation it never gets any easier, as he went through those double doors where they don’t allow parents my heart sunk to the ground. When Owen returned from surgery, he was not a hundred percent fixed. Like I said before so many more health issues go along with CDH. We were nowhere to be over this and going home. Owen was still very sick.”
Owen continued to battle through and overcome so many obstacles. He was in the NICU for 162 days before his family advocated to take him home on May 7, 2020. “It was no longer a distant dream we were actually going home. My husband and I had so much excitement, but so much fear as well. Going home meant we wouldn’t have the NICU and everything that came with it. The amount of resources for such a long period of time but we realized when we got home Owen liked the quietness of not having someone do something to him every thirty seconds. He seemed relaxed and extremely happy. Our sweet boy for the first time was allowed to visit his family. We loved every second we had with him at home being able to share our memories and creating new ones with our family. I was blessed to be able to enjoy mother’s day with my baby boy at home with family. Owen seemed to have received exactly what he wanted, time to be with family and coming home,” Haylee recounters about the milestone of taking her son home.
On May 12th 2020, Owen passed away that night surrounded by the love of his parents. Haylee shares, “not a single second goes by where we don’t miss him and speak of his name. The grief I carry because I lost my son to the fight of CDH is extremely hard to fathom. It’s been over a year and a half since I’ve lost my son and it hasn’t gotten easier nor will it ever. My husband and I have had another child since Owen has passed, and I tell her everyday how her brother was a true warrior. She would be so proud of Owen and he would have been such a great big brother.”
Tune in to the CDH radio show, to hear more about the hurdles and obstacles Owen faced during his CDH journey and how much he overcame. Listen to his mom share his life and tell you more about Owen. Owen’s heavenly birthday is November 27th, he would have been two this year.
If you are interested in sharing your child’s journey with CDH, please visit https://cdhi.org/shareyourstory/ for more information.