The ECMO is not a machine that Mallory can be on for an extended period of time. Although I am still hoping for a miracle that she will make a huge improvement to the function of her heart, to bridge the gap between ECMO and a transplant, Mallory will need the assistance of a VAD device called a Berlin Heart.
This functions very similar to the ECMO in that it supplements her heart function, but instead of a continuous circuit flow, the Berlin pumps blood very similar to our hearts. It is also attached to the heart itself.
Once a patient gets the Berlin Heart, it is permanent and transplant is the only option at that point.
The Berlin Heart has been used here at Egleston for a few years, but it was just recently approved by the FDA. Mallory would be the second baby to use this device here since FDA approval.
Today they brought in one for us to see. It is actually much smaller than I thought it would be. They think she will only need one attached to her left side, but there is the possibility that they would need one for the right side too.
The hope is that she can then have her ventilator removed, potentially be fed and we could actually hold her!
I cannot even express what I would do to just hold my baby girl again.
Here is a website with a lot more information:
http://www.berlinheart.de/index.php/home
The plan right now is to have the procedure on Monday morning.
Jessica - Tera told me about this last week and I immediately went into a state of prayer. You guys, the doctors, nurses, everyone are in our thoughts and prayers. I cannot even begin to imagine what this must be like but I do know you all have a lot of support, prayer, and positive thoughts coming your way!!!
ReplyDeleteJessica, my family's thoughts and prayers are with you and your entire family. Just know that so many people are thinking about you and supporting you. We are all ready to help support you whenever you are ready and Mallory is recovering, because she will be. You have a wonderful family. I hope you have a fabulous Mother's Day!
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