[Pamphillips01]

Hello everyone. My name is Pam. I am 41 years old, from Nashville, and I am a first time Grandmother to my beautiful Grandson, Killian Kayne.

This beautiful amazing baby came into my life on January 2nd, and was born with a severe birth defect known as Congenital Diaphragmatic Hernia, (CDH).

His diaphragm failed to fully form and his abdominal organs passed through the opening and developed in his chest. This in turn didn't allow for his lungs to develop, and his heart was pushed over to the right side of his chest.

Normal lungs of a newborn are about the size of a lemon, Killian's are the size of a grape. Because his lungs aren't working, at 3 days old he was put on a heart and lung bypass known as "ECMO". Two tubes were inserted directly into his heart through his neck. One tube drained all the blood out of his body and ran through an artificial heart and lung, then another tube returned the Oxygenated blood back into his heart.

He has never taken a breath on his own, he has never cried, and he has been on full life support at the Vanderbilt Children's Hospital here in Nashville. The doctors have given him a 5% chance of survival. For 9 days his heart rate stayed at 200+, (normal heart rates for newborns are between 120-130), and his blood gas showed his oxygen level was at 15, (normal is in the upper 60's).

On his 3rd day of life, they performed the surgery to fix the herniation and moved the organs (liver, stomach, large and small intestines, spleen) back down to his abdomen. After 2 hours the surgery was over and things went great! We were so happy, I dropped to my knees and thanked God. The next morning we found he had internal bleeding and had to go back in where they inserted a chest tube and opened the incision back up, where up until last Friday, remained open. Only a small piece of mesh held his organs in.

A week later his blood gas showed he had contracted Sepsis, which is a deadly infection. That last over 2 weeks before they finally got that under control.

My daughter in law was ready to remove him from life support on January 17th, from the advice of doctors, but decided at the last minute to change her mind. Since then he has done better, but the doctors have told us with the severe case of Pulmonary Hypertension he has, which is making his heart work MUCH harder than normal babys hearts do, there is no way he can survive. They are doing another ECHO on his heart today so we will know where things stand.

Needless to say, we are consumed with worry and pain. Each day that passes my heart and soul shatter a little more. I'm afraid when my phone rings it's going to be "the call". I'm afraid to go to sleep at nite for fear when I wake up he will no longer be in my life, but most of all, with each hurdle he passes, I'm afraid to get my hopes up because something else happens.

I have created a facebook page where I update his condition daily. This is for 2 reasons. One, we have found that many people would like to follow Killian's CDH journey. The second is raise awareness of this horrible birth defect.

Here is the link, please feel free to "like" his page and help pray with us for his survival. He means the world to me. And even one day without this amazing creature in my life is not an option. We need all the prayers we can get. No...scratch that....WE aren't needing the prayers......KILLIAN needs the prayers. I can't post the link on this thread, but you can search "Killian Kayne Brocius" on facebook, and you will see his community page there. THe picture that shows is of my son, looking down on Killian. If you can't find it, please feel free to email me and I can send you the link directly.


So with this said........I know this is a site designed for mothers...but I'm hoping you can make an exception for me. I am desperately wanting a "siggy" made with pictures I have of my Grandson to have forever. Most all of the pictures I have of him, there are tubes, wires, machines that are keeping him alive, and more medicine pumps that I can even count, so it would be great if I could have something that showed maybe some peace with this poor baby. If that makes sense? If someone could point me in the right direction for a request, that would be great. He is such a beautiful baby everyone....he really is!

Thank you so much in advance! And thank you for letting me get this off my chest!

Pam~

[Admin-pattyandthemoos]

Hi Pam. Welcome to JM. I have heard of CDH but have never personally known anyone that had a baby with this condition. It sounds like your grandbaby has been through so much. I hope that you will continue to update us.

You are welcome to request a siggy for him. We ask that members have 50 posts before requesting a siggy. That is really easy to do if you post on JM regularly. There are a ton of great boards here.

Welcome!

[Pamphillips01]

Thank you!!!

[MellieB]

Welcome!

I am so sorry for your grandson. We lost our son when he was 4 months old to complication of a congenital heart defect. Please feel free to join in on the Loss of a Child board.

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