Baby Liv's Funeral Expenses

UPDATE: Lively Mae Hembree was welcomed into the world on August 23, 2014 by her proud parents, Daniel and Beth Hembree, and her big brothers, Asher and Eli. She weighed 4lb 1oz and was born at 36 weeks 1 day at Woman’s Hospital in Baton Rouge. She traveled by plane to Texas Children’s Hospital in Houston and spent several days in the cardiovascular ICU before finally being flown back to her home in Zachary, LA. Liv passed away from her physical life at home in the arms of her loving parents on September 1, 2014 and is now rejoicing with God in heaven.


Liv was loved and cherished long before she was born, and through her short life she has deeply touched many hearts. Her family and community are immeasurably blessed by her life and praise God for the ways in which he is using Liv’s life for His glory. Through Liv, her family has learned how to be better parents and spouses, and what true Christian community looks like. She is loved and will be missed by all.

Funds for this GoFundMe account will be used for Liv's 6 day stay in the hospitals, her two airlifts between Baton Rouge and Houston, and her funeral costs. Continued prayers for Beth and Daniel are greatly appreciated.

Myself and my sister, Cathy, are setting up this page for our older sister, brother-in-law, and our unborn niece. Our goal is to help relieve them of the financial burden they will be facing in the coming months for the significant amount of medical care that will be required for sweet baby Liv.

After months of excitement and anticipation of finding out that they were expecting their 3rd child, they received some heartbreaking news on May 22nd that no parent ever wants to face. After several months, they finally got the full story. Baby Liv has Hypoplastic Left Heart Syndrome (HLHS), a Cleft Lip & Palate, and a partial deletion of chromosome 22. In addition, she seems to be small. HLHS means that the left side of her heart is too small and isn't pumping as much blood (none in her case) as it should. It also turns out that of the various congenital heart defect that exist, HLHS is one of the worst. As Beth & Dan researched more about HLHS, they found that the “treatment” is very extreme and more of a patch than a repair. Liv will need to undergo 3 open heart surgeries (the 1st within her first week of life) within about 3 years to essentially re-pipe her heart so that the right side can do all of the work that was meant for the left side. She will spend significant time in the hospital / ICU and the list of potential complications and additional procedures longer than they ever thought possible. After all of the surgeries are complete, there is the chance for a reasonably “normal” life, but always looming is the high chance of heart failure (because the right side of your heart is not designed to carry the full load) and the need for a heart transplant somewhere down the road. Having a cleft lip & palate and chromosome deletion only add to the complications and complexity. They continually see that adding any additional issues to HLHS causes the survival rate to plunge and the risk for potential complications to increase. The cleft lip & palate repair requires a couple surgeries, which would normally be pretty low key in comparison, except for the fact that any additional surgery on a child with HLHS is a pretty scary ordeal. Also, they’ll have to work with the surgeons to fit the cleft lip & palate surgeries in around the heart surgeries, which will be delayed to some extent. It’s hard to determine how the partial Chromosome 22 deletion fits into the whole picture. Liv’s deletion actually overlaps two other “known” syndromes (DiGeorge syndrome and Distal 22 deletion). Deletions in this region are known to cause heart defects and cleft lip / palate issues; however, neither of these syndromes are linked to HLHS – it’s actually extremely rare to have HLHS and a Chromosome 22 deletion. So while the chromosome abnormality can bring a lot of other symptoms (immune deficiencies, developmental delays, etc.), it’s difficult to determine how many or how severe these will be. The only way to know is to check at birth and as she develops, and even then, it may be difficult to determine the full impact. The good news in all of this is that with so many ultrasounds, the doctors have very thoroughly checked for all sorts of other issues, and thus far have not been able to find much. She is small, which could be related to her chromosome abnormality, and could also create issues for the HLHS surgeries. So far her growth seems to be continuing and not slowing down much further, which is good news. Because the medical treatment options are so severe (and the probabilities of survival are low), we considered for a long time the option of comfort care: choosing not to perform any surgeries and allow Liv to live out her short life without ever having to know the pain of surgery or other extreme medical treatment. After several weeks of prayer, discussion, and research, they started to turn away from this option, in part due to the finality of this decision (without surgeries, there is a 100% chance that Liv will not live longer than about 10 days). They are currently getting ready to go to Texas Children’s Hospital (TCH) in Houston (the closest hospital that performs all 3 surgeries for HLHS, and also happens to be #2 in the country for this type of treatment) so that Liv can be born and evaluated there. TCH is where we plan to have all 3 of Liv's heart surgeries, any other heart procedures, and her cleft surgeries. Deciding to do the HLHS surgeries is a huge decision, but it is only one of many that will present themselves over the next several months and even years, beginning the day she is born in September. We pray for strength and guidance for every single step of this journey.

Beth and Dan have taken this all in full faith and know that there is a purpose for Baby Liv's life. Their faith is unshaken and so inspirational. In addition to any financial support, prayers are our number one request, because we believe God will always provide. No amount is too small, and the whole family appreciates any help on Beth & Dan's behalf!
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Organizer

Mary Higginbotham 
Organizer
Zachary, LA
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