Some families have weeks or even months to prepare themselves for the hard road ahead if their child is prenatally diagnosed with a congenital heart defect. Others are thrust into the world of CHD hours, months, or even years after birth. Charlotte’s family has a unique story of the unexpected in her arrival and diagnosis!

Our daughter Charlotte is full of surprises.

When my wife, Erin, and I found out that we were going to be parents we didn’t have the typical nine months to plan and prepare, we had about twenty-seven hours. Our journey to start a family through adoption ended with a flurry as we were told that our soon to be daughter would be born the next day in Topeka, Kansas. We left our jobs for the day, coordinated our travel, and flew from our home near Nashville to Kansas City and then drove through the night to get Topeka. The next day at four PM, as planned, our daughter, Charlotte Mae, was born. We were excited, happy, tired, and a little scared but we finally had the healthy baby girl we had been dreaming of for years. However, like I said earlier, Charlotte is full of surprises.

Twenty-four hours later, while we were still getting over the shock that were parents and Charlotte was just getting used to being part of the world, the doctors conducted a routine check-up but what they found was far from routine. Charlotte’s heart did not have the “Lub-Dub” that would be expected but instead made a strong “whoosh” sound indicative of a murmur and CHD.

Charlotte was immediately rushed from the maternity unit to the NICU next door to undergo an Echo and other tests necessary to determine the severity of her condition. Charlotte was quickly diagnosed as having textbook Tetralogy of Fallot or Tet. We were shocked and scared but unlike many others with  CHD Charlotte’s case was very minor on the spectrum. She had not showed any signs of turning “blue” and her vitals were strong. We just needed to get top tier pediatric cardiology hospital to determine the best course of action.

Charlotte’s next surprise was that by having an adopted baby with CHD  you get things done – fast. After four days in the NICU we were discharged and headed to a courtroom to discuss Charlotte’s guardianship. To our surprise her CHD expedited the finalization of her adoption and we left the state of Kansas as her legal parents with no restrictions. As anyone with adoption experience knows this is fairly unheard of and was truly a blessing of her CHD.

Once arriving back in Nashville, Charlotte was quickly evaluated at Vanderbilt by Dr. George Nicholson and Dr. Bret Mettler who confirmed her diagnosis and targeted a surgery date for December, 2015. They were confident her surgery would go well but shared that her best case would be if they could save her heart valve she would likely never need any other surgeries.

On December 21^st, 2015 Charlotte underwent her Tet repair under the skilled direction of Dr. Mettler. As expected the surgery was a rousing success and not only was the arterial repair completed but Charlotte had another surprise in store. Her ductus had not closed at birth and was acting as a shunt for bloodflow in her heart. This was not visible on numerous Echo’s and likely the reason why she had nearly perfect saturation levels and had not experienced the “blue” episodes of most Tet babies. In one final surprise Dr. Mettler was able to save Charlotte’s heart valve making the success of her surgery the ultimate 1^st Christmas present for our family.

Seven days later we were discharged from Vanderbilt Children’s hospital with our happy, healthy baby and a little heart rhythm medicine. We have now started the next phase of Charlotte’s story as a CHD survivor and although the scars have started to heal we will remain an advocate for early detection and treatment of CHD.

In the early 21st century a diagnosis of Tetralogy of Fallot was an inevitable death sentence. In 1944, the BT shunt was first used as a pallative means to treat “blue babies.” Now, full Tet repairs are available for children like Charlotte with relatively low mortality rates around 5%. Research and brave pioneering have made a relatively normal life possible for children with this condition! We want to see the same (and even better!) outcomes for other severe, yet common heart defects like single ventricle cases. Your donations make continued research and the health of children like Charlotte possible!

PROJECT HEART IS A 501(C)(3) NONPROFIT DEDICATED TO RAISING FUNDS FOR CHD RESEARCH. HELP US CHANGE THE LIVES OF CHILDREN LIVING WITH CHD. DONATE A TAX DEDUCTIBLE GIFT TO PROJECT HEART AND SUPPORT CHD RESEARCH HERE: HTTP://THINKPROJECTHEART.ORG/DONATE