February is the start of all kinds of emotions and purpose for me every year. As I write this blog, I am forced to think back on when my true mission started in the fight for awareness about Congenital Heart Defects or CHD’s.  Prior to February 2012, I had never though too much about CHD’s and the statistics around them, until I was personally affected. In this month’s blog post, I will be sharing our story to help shine a light on CHD awareness.

The story of Elijah Thomas, the bravest little soul with the biggest impact, and my son. In 2011, I was remarried to my current husband Ron; we had combined our families and were ready to expand with more children together. In August 2011, I found out that I was pregnant with our first child together – we were overjoyed! In October, I had some prenatal screening and had our first realization something was wrong with our baby. During an ultrasound, the technician saw a large sac of fluid on the back of Elijah’s head and neck called a Cystic Hygroma.  Babies with Cystic Hygroma’s have a high risk of Down Syndrome, Turners Syndrome, CHDs, and many other defects and syndromes. This was the moment when everything started to change.  My “momma bear instincts” kicked in coupled with true fear. I began the path to educate myself, research, and doubt really kicked in, all while trying to be positive and determined to find answers and lead our family with hope and faith. Finally, in December 2011 after months of testing for Chromosomal defects, Genetic testing etc. a diagnosis was determined, Elijah had Hypoplastic Right Heart Syndrome.

Hypoplastic right heart syndrome is a rare heart defect/rare disease, present at birth (congenital), that results in low blood oxygen levels. It is caused by underdevelopment of the structures on the right side of the heart (tricuspid valve, right ventricle, pulmonary valve, and pulmonary artery). The underdeveloped right side of the heart is unable to provide enough blood flow to the body, leading to low blood oxygen and cyanosis. In Layman’s terms, the heart has 4 chambers, the right side of the heart (2 Chambers) are nonexistent. This is a devasting prognosis for any parent to hear. The experts told us the statistics on the survival rate, treatment options/lack thereof. As a parent and especially a mom, you question what you did or didn’t do, why this is happening to you and your baby. One thing was clear, we were in for the fight for Elijah’s life!

Elijah Thomas was born on April 18, 2012, he was beautiful with full chubby cheeks and a head of dark brown hair.  At first glance, you would have never believed he was born with half of a heart. 12 days of prayers, happiness, tears, unfortunately were not enough. We lost Elijah at 12 days old. Elijah was not able to recover after his first open heart surgery and he became a statistic of CHD’s. 

Did you know 1 in 4 babies are born each year in the United States with a CHD that is 25% of babies!

In the US, there are less than 50,000 cases of Hypoplastic Right Heart syndrome.

CHDs are a leading cause of birth defect-associated infant illness and death.

About 75% of babies born with a critical CHD are expected to survive to one year of age.

About 69% of babies born with critical CHDs are expected to survive to 18 years of age.

Congenital heart defects (CHDs) are the most common types of birth defects.

My mission: to use our experiences to continue to educate on CHD’s, raise awareness for the CHD community, to be an advocate for patients and care givers, to share my story and help others on a difficult path. I am lucky enough to work in an industry where I can connect and feel like I am helping from a patient and caregiver angle. I have been lucky enough to bring professionals to the market that will be a part of helping Rare Disease families and patients finally receive treatment. When we work with Rare Disease companies and they ask why I’m different, I share my story, I connect, I empathize, I have passion and a mission to deliver the most qualified compassionate candidates to help others.  When I do this, I receive messages like this:

“Good morning, Tera, when you shared that story about losing a child really struck a nerve with me and the fact that you have multiple kids, used to be a Rep in the field, and now you are graciously juggling again to make differences in multiple people’s/patient’s lives. I not only Respect but Admire so much what you do!! The WHY behind you working in Rare Disease was genuine and I never get that feel from any recruiter so you to deserve to hear that and it underscores how you’ve been so successful!!”

I love how my job helps others and this will continue to drive my mission through my own journey of Love + Heart Break = Mission.

If you would like to read the real time chronical and journey of ElijahFarhat click here for his Blog.