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Stories of Lost Grandchildren

Hannah Joran's Grandparents
by Beth Bynum, Milton, NH, U.S.A.

Hello my name is Beth. I just wanted to write and tell you I had a 6 month old son on the ECMO machine. I haven't had much luck trying to find other parents that have gone through that horrible experience. My baby boy had a very rare syndrome and had to have heart surgery. 5 days after the heart surgery, he went into cardiac arrest and had to be put on the ECMO to let his heart recover. He never came off that horrible machine.

The machine works wonders but at the same time can do so much damage. My son's chest was open the whole time he was on the machine. I don't know if that is how it is all the time, but because he just had heart surgery, it was easy for them to just open it back up and hook up the machine that way. We were told after 5 days on it he was doing very good and was expected to come off the next day. Well, the next morning when I woke up, I went to the CICU and they told me Dylan (my baby) had liver failure and kidney failure. His body was starting to shut down because of being on the ECMO. So you see that is why I say it works wonders but at the same time can do so much damage. So that day at 12:07, my baby died peacefully in my arms.

We will always love and miss him. His syndrome is extremely rare and I can't find any parents who have children with the same syndrome. So I was trying to find someone that has had an experience with the horrors of the ECMO machine. I can not stop reliving the images in my head of him lying on the bed hooked up to that machine. I think it would be helpful to talk to some one.

If you would like, you can e-mail me at bndnb04@metrocast.net or n8_n_dylan@yahoo.com. I would really appreciate it.

Thanks. My Thoughts and prayers are with you and your family.

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