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Petition Against Congenital Diaphragmatic Hernia Awareness Trademark Ownership **PIOG**

Posted by on Jan. 2, 2009 at 11:39 PM
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This petition may not mean a lot to some of you, but others it might.  Please click the link and read the information and please sign the petition.

I'm a mother to a CDH Cherub in Heaven. here is his story and hopefully it'll help motivate you to sign.

On September 11, 2006 I went in for my first ultrasound, I was so excited because this would be my first child! Everything seemed to be going great until that dreadful face appeared on ultrasound tech’s face, she ended up bringing in the head of the department and another doctor, but no one could tell me anything. Fifteen minutes after I left I found out that it was possible that my son had CDH on the right side. I was immediately sent to a perinatal doctor in my area that confirmed that it was true, except that is was on the left. I had an amniocentesis done, but luckily it wasn’t genetic, it also told me that I was having a little boy; the news was very bittersweet. My doctor gave me three choices, Riley, St. Vincent, or Cincinnati Children’s; having done my research I knew that Cinci was the best choice, even though it was almost 3 hours away.

I went down to Cincinnati on Oct 11 for the usual MRI, ultrasound, and ECHO. At the end of the day I went in for my “Team Meeting” where they told me that not only was Weslee’s stomach up in his chest, but his liver was heading that way as well. They explained my choices, which included EXIT to ECMO; of course everything at that time sounded like gibberish, I never understood a word. They informed me that I would need to relocate down there 2 weeks prior to delivery, that news made it all the worse. After all of that life returned to a semi-normal state until I went back down for what I hoped would be a nice long stay. I went down there on January 1, and delivered Weslee Raymond on January 15. My husband and I chose EXIT to ECMO. I was in surgery for what they told me was 4 hours, and Wes came out as fine as could be expected. I spent four days in the hospital going to see my baby as soon and as often as I could. He did fine for about the first week, then he started having kidney problems, he was becoming unable to get rid of excess fluids, which they were pumping him full of. He made it 1 week and 5 days on ECMO. They were doing different tests such as ultrasounds everyday. On that Sunday they found that he had a 1cm area on his brain from which he was bleeding because of the blood thinners he was on. They took him off of ECMO and he seemed to do fine, but he was continually getting bigger from all the fluids. They tried and tried to get him to get rid of it, but it just wasn’t happening. On Tuesday everyone could tell that Weslee just wasn’t going to pull through, his doctor told us that Wes needed a break in the next 12-24 hours and if he didn’t get that break then there would be nothing else that they could do for him. At 7:45am the next morning we got a phone call and my husband and I immediately rushed over to the hospital and found that his blood oxygen levels had dropped off and weren’t improving. That was it, the straw that broke the camels back. We got our family down there that day to meet Wes, everyone got to hold him and share in the bittersweet event we were experiencing. We dressed him in a pointy hat and yellow John Deere socks, he looked so cute. I told everyone that day that he walked into heaven dragging the blankie his grandma made him, wearing his socks, hat, and diaper proud. I was the first and last person to hold him, my little baby boy died in my arms; the date was January 31, 2007. Weslee never suffered, or so they told us.

His funeral was the next Saturday. He looked so angelic in striped sailboats. He may have physically left the world, but as all little babies do, he made an impact on everyone he met. It has only been 6 months, but it seems like it was just yesterday. I am 19, a mother of one, and the strongest person I know. The day I let Wes go was the proudest moment of my life, I was doing the most selfless thing that I would probably ever do in my life. I live every day for my son, to make him proud of his momma.

Written by: Elayna

Mother of Weslee Raymond

Born: January 16, 2007

Died: January 31, 2007

by on Jan. 2, 2009 at 11:39 PM
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