Brody’s Story

Site created on December 16, 2007

Brody was born with Hypoplastic Left Heart Syndrome.  Basically, he has half a heart.

My Story is the introduction to our CaringBridge site.

Be sure to read the latest in the journal, view the photo gallery, and drop us a line in the guestbook. Also, check out the links to better understand Brody's condition.

During our 21 week ultrasound, we learned that Brody was diagnosed with a rare heart defect known as Hypoplastic Left Heart Syndrome. This means the left side of the heart did not fully develop. We were given three options, terminate the pregnancy, carry to term and seek no treatment, or surgery. We didn't take much time to consider the options. As far as we were concerned there really was only one, surgery. Brody will go through a series of three open heart surgeries within the first 2-3 years of his life.
Update: He has made it through all of them! What a crazy ride it has been. We thank everyone for all your thoughts and prayers!
Update May 2022: Brody has been diagnosed with PLE. We are currently trying to manage it with meds. If it can't be managed with meds, he will end up on the transplant list. We are hoping and praying the meds manage this for a really long time. 

Newest Update

Journal entry by Marc Brill

I don't know if anyone still follows this page but wanted to put an update here in case. And in case someone finds this page through Google. It's been pretty smooth sailing since Brody's last surgery in 2010. He's been a normal kid. Wrestling, playing baseball and is super smart. A couple weeks ago we noticed swelling in his eyes, abdomen, and ankles. We were admitted to Children's for 2 nights for Albumin treatments. He was luckily able to make it on his 8th grade class trip to DC! But this definitely hit us out of nowhere. 

At our last appointment, he was diagnosed with PLE. Dr Stiver explained PLE a little more to us. We will have labs Mon to check his levels. Hopefully they will do their job. Brody might be admitted if his Albumin is still low so he can get infusions to get his protein back up. She said we can wait on the Cath until we get back from Mexico as long as everything is going ok. We are so very thankful for that. We've had such a rough year and it will be nice to get back to our happy place. We were supposed to go in 2020 and cancelled because of stupid Covid. It would have been our last vacation with my mother in law and I'm so disappointed looking back. Dr Stiver said the possibility is there that we can manage PLE for years with meds. If meds don't work we would start talking to the transplant team. So overall a good visit. We are so very thankful for all your prayers ❤️ Keep them coming as we need these meds to work and give us several more years!! 🙏 I implore you to live life to the fullest. Don't let life pass you by. Love Big. Love Strong. Live Big. You never know what the future holds. #hlhsistryingtostopme #wewontletit #hlhswontstopme #Brody

❤️Leesa
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