Monday, February 21, 2011

Bittersweet Awareness

Throwing up our "4's" for 4 years! 

I planned to write a post this past weekend as my husband and I celebrated our 4th wedding anniversary. The two of us lovebirds have a tradition of going back to the La Costa Resort & Spa every year for our anniversary and staying for an evening as we did the night we got married on February 17th, 2007. This trip was a bit bittersweet because as we were packing to leave I got a text message from a friend asking me to pray for a little boy named Travis. My friend explained that this little boy was about to go into a CT scan after going into cardiac arrest the day before. Travis was 16 months old. My friend quickly sent me the blog so that I could follow the story of Travis and so I did. I jumped on the computer and was in tears immediately. I got on my knees and my daughter and I began praying for this family I had never met. I sent out a mass text message asking for prayer for this little boy that touched my heart the moment the blog page loaded.

In the next few hours, the unspeakable happened and Travis was pronounced brain dead. My heart sank. This little boy was going home to his creator so soon... Talk about a whirlwind of emotions.. I just found out about this little boy and my heart was already invested in his story... a little background.. Travis was born October 23, 2009 with a Congenital Heart Defect known as Hypoplastic Left Heart Syndrome, or HLHS. The short explanation is that Travis was born with only half of a heart. Since Travis's birth he has gone through a series of 4 surgeries, 3 cath lab procedures and many other tests. February 18, one day after his 4th surgery his heart stopped beating for 2 hours, while the medical team administered CPR for 2 hours while they hooked up the ECMO (heart/lung bypass). Although his blood gas levels were good throughout CPR he was declared brain dead on February 19.

I sat there in shock and wanted to help this family in some way. Come to find out they live in my community only a few streets away from me and they also have an adorable daughter also named Addison born on November 14, 2010. I am now helping organize meals to bring to them over the next month with my wonderful church backing me up. I can't help but wish there was something more I could do for them.

I got a response from my mass text from a friend and she wrote me something that really touched my heart. I even posted it on the family's blog page. It was a quote by Randy Alcorn. "Those who believe in Christ could more accurately call our present existence the beforelife rather than calling Heaven the afterlife. Life doesn't merely continue in Heaven; it emerges at last to it's intended fullness."

I know that no human words would give them comfort at this time. I just encouraged them to hold each other, and their beautiful little 4 month old girl and look to Him... I am continuing to pray for their family that peace will surpass all understanding... I also wanted to encourage them to not stop their blogging. Travis' story has touched many people and Travis' life will be etched on many hearts. Come to find out, the family selflessly donated Travis' kidneys to a little boy in need in L.A. His legacy will live on. You can follow Travis' story by visiting They are still looking for help in forms of gift cards to help defray costs of the celebration of life and also for the parent's loss of work. If you, as I was, feel compelled to help this family please comment on this post and I will get in touch with you and let you know how.

Another way I felt I could help this family was by educating myself on this heart condition and helping bring awareness to others. I had never heard of HLHS. Reading more about it on her blog brought me to another blog and another blog that also were families touched by this condition. Although HLHS is not as common, come to find out CHD (Congenital heart defects) is actually INCREDIBLY common and I had NO idea. Here are just a few facts on CHD.

CHD Facts
  • Congenital heart defects (CHDs) occur when a baby's heart fails to form properly during early pregnancy. In most cases, the cause is unknown, although scientists feel both genetic and environmental factors play a role.Some environmental factors that increase the risk of CHDs include the mother’s use of cocaine, alcohol or certain medications while pregnant. Some maternal medical conditions – such as diabetes – may also increase risk.
  • CHDs are the most common birth defect – and the leading cause of birth defect-related deaths.
  • CHDs occur more often than Spina Bifida, Down Syndrome or hearing loss – and kill twice as many children as childhood cancer.
  • It is estimated that 40,000 babies with CHDs are born in the United States each year – that’s one in every 100 babies.
  • Although some babies will be diagnosed at birth, newborns are not routinely screened for CHDs – and pregnant women are not routinely tested for CHDs.
  • There are approximately 35 different types of congenital heart defects. HLHS being the most difficult to "treat".
  • Some CHDs may be treated with surgery, medicine and/or devices, such as artificial valves and pacemakers. In the last 25 years, advances in the treatment of heart defects have enabled half a million U.S. children with serious CHDs to survive into adulthood.
  • Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and childhood-onset heart disease.
  • Early detection is critical to the successful treatment of CHDs. Some heart defects can be detected by a routine ultrasound – but the most effective prenatal test is an echocardiogram performed by a Pediatric Cardiologist.

My family has even had their share with a child with CHD. My little cousin happened to be born with a rare heart condition and just last year was named the New Hampshire Children's Miracle Network's Champion Child. For Caleb's amazing story you can check out this link below. Caleb is now almost 5 years old, but my uncle and aunt still approach each day with guarded optimism as they put it. So is the life I realize of any parent of a CHD child.

Caleb's Story

In reading Travis' story, I mentioned I also bounced to other blogs. I found one that stood out to me and one of this mother's posts was incredible and really put into words why CHD awareness is so important. I encourage you to read it...

Hope for Baby Bennett

I'm leaving this post very bittersweet. Although I did have an incredible weekend celebrating with my amazing husband that the Lord has given me for the past 4 years, the weekend couldn't help but be in the shadow of mourning this little boy... I got home from our weekend and hugged my kids a little tighter and gave them extra kisses. I can't imagine the pain the family is in now home to a quiet house, without a 16 month old in it. I think most of us forget how blessed we are to have children without any medical issues. Here I was frustrated just last week over my son getting yet another congested nose. Definitely puts your world in perspective knowing that something like this is going on just down the road...

I close with this Psalm...

 "The LORD is close to the brokenhearted, and saves those who are crushed in spirit." Psalm 34:18 ♥


  1. oh my gosh...just looking at this family's blog about their little boy brought tears to my eyes, it really does put things into perspective, I'll continue to pray for them during this difficult time!

  2. Oh Heather, thank you for this lovely post. I just found your blog through Crysta's post of Raving Tans. I was happy to read about your family....I love blogs....and I love neighbors. I was so touched to read this entry about our boy. Thank you so much for the prayers and for reaching out to others!!!

  3. Thank you so much for posting this. I am one of the oldest survivors of HLHS age 25. I knew the DiCarlo Family personally and got to hold little Travis. His death shattered my heart. He and his family will forever be in my heart. Thank you for your passion about wanting to raise CHD truly means alot

  4. Thank you for posting this blog about Travis and HLHS. My daughter, Zoe, is a 10-month old HLHS warrior. While I never had the opportunity to meet Travis in person during his sweet, short life; I was able to meet his unbelieveable mom and dad at his Celebration of Life. Thank you for taking interest in Travis, HLHS and CHDs. 1 in 100, a shocking statistic that I never knew of prior to my Zoe's birth. It's one of those things that you think will never happen to you.

  5. Thank you for all your comments and Nicole, I love neighbors too. :) I would also like to know if there is a CHD fund? Is this something I can put a link to on my page? Thank you all.. my heart and prayers are with each of you...


I'm blessed by your sweet words!

They inspire and encourage me to keep sharing my story...

Thank you.