Thursday, August 18, 2011

HLHS

I've realized that I have strayed from my main goal of this blog. It is first and foremost to document Bela's extraordinary fight with her Congenital Heart Defect HLHS. It is to hopefully provide hope and help to others who are going through similar situations with their babies. I just got a comment from a mommy of a newborn baby girl with HLHS and Turners. I was so thrilled that she found my blog and that I will be able to connect with her! She said that seeing Bela is giving her hope. Hope is the best medicine there is!

Bela at Disneyland


I recently found a blog called The New Left Heart Kid (Thenewleftheartkid.blogspot.com) started by Carter's mom to give hope to others with HLHS. In her first post she wrote:

"No longer afraid of the journey itself, I've learned to accept things as they are, and embrace the beautiful gift we've been given. Along the way, I've learned a few things, but the most important lesson stands out above all - today kids with Hypoplastic Left Heart Syndrome can survive - and do amazing things!"

I couldn't agree more..

3 comments:

Amy said...

I recently read a newspaper story about a baby in England also with HLHS and Turner's. Let me see if I can find that. Here:

http://www.sundaymercury.net/news/midlands-news/2011/07/31/baby-born-with-half-a-heart-in-life-saving-op-at-birmingham-children-s-hospital-66331-29149803/

Glad that Bela's doing well!

Amy, mom to Daniel (4 years old, HLHS)

Jarod and Tanya Rollins said...

Its so true-I recently came across a coupon mom's blog and her son has HLHS and is now 9 years old. I was so thrilled to see that! Her website is very popular so you may have already heard of it: athriftymom.com Couponing is one of her passions and it started because of trying to save money for her sons treatments. I love to hear stories of success and know that Bela has all the hope in the world fighting for her.

Anonymous said...

Hi Amy that's us in the paper! We were on the local news too, but unfortunately Niamh's still in hospital, Im constantly searching for people in uk with the same complications as Niamh, bt can onli find in u.s, so here's a bit about us, I'd be great full if anyone had any suggestions, My daughters a left hypoplast, with turners, she's had a ladds procedure for malrotation and is suffering with ascities gathering in the stomach so now she struggles to breath and requires oxygen due to low albumin. She had a Norwood procedure , but still waiting for 2nd procedure to take place as she is not a possible candidate yet due to the other complications, she's 6 months and been in hospital since birth, cannot find any info or similar cases on the net in uk, can anyone help? Have any advice? Similar diagnosist? Would be much appreciated, thanks :)