Bellamy’s CHD Story

Hello families!

My name is Leah and our daughter, Bellamy, is a 4-year-old beauty who happens to have an extra 21st chromosome!  

In the early weeks of our pregnancy, we were informed that a blood test showed there was an 89% probability that she would have Down syndrome.  Due to my age at pregnancy, 41, we were already seeing our MFM regularly but this test result made for more regular & thorough scans.  At our first anatomy scan, additional markers were found, including a heart defect.  We were immediately referred to pediatric cardiology where they diagnosed Bellamy with Tetralogy of Fallot with a complete AVSD.  I was already experiencing ‘all-of-the-feels’ that the 89% probability of Down syndrome incurred.  Then, to lay on a hard exam table while they scanned her little heart while in utero…I simply laid there and silently cried through the whole thing!  What was happening!?  What would her life be like?!  Would this mean multiple surgeries for her!?  

Our pediatric cardiologist was, and still is, a beautiful blessing to us!  As he was drawing us heart diagrams, explaining her diagnosis, and giving us the run-down of his experience with ToF, it was scary…but the more info I had, the more people I found with a similar diagnosis, and the better I felt about it all!  Bellamy’s heart was monitored bi-weekly for the remainder of my pregnancy, during her time in the NICU she had daily heart evaluations, and when the time came that her little heart could no longer keep up, at 7 weeks old, we were referred to Nebraska Children’s for her procedure.

It was shortly after that initial blood test that I found Jack’s Basket!  I was in desperate need of resources and direction…anything…that could give me some form of peace and comfort!  Finding Jack’s Basket was the exact blessing that I needed & my family will forever be grateful for the community that we have found through this organization!  We have since shared the mission of Jack’s Basket with other family and friends, and they have in turn shared this wonderful resource with others who received similar diagnoses.  

Bellamy is rockin’ preschool with her neurotypical peers, she learns and grows weekly at her OT and speech therapy appointments, and we often forget about her heart diagnosis until someone points out her scar or her heartiversary pops up on the calendar! The resilience that Bellamy has portrayed through these short 4 years will forever make her my hero!  I am in awe of her strength and determination!  I can not even begin to put into words how she has made me better!!  My heart overflows, my passion for advocacy is like I never knew it could be, and I will work forever to make the world a better place for Bellamy and her friends who also happen to have an extra 21st chromosome! 

Thank you, Jack’s Basket, for being a light for families, during a time that can be confusing and difficult!