Our story began at Freddie’s 19 week ultrasound. The sonogram technician kept circling around his heart and said “there’s a problem with his heart anatomy”. We were first told he had Truncus Arteriosus; subsequently we learned his true diagnosis: Tetralogy of Fallot with Pulmonary Atresia with Multiple Aorto-pulmonary Collateral Arteries (MAPCAS). A ruined pregnancy turned into a silent blessing as we had time to research the best medical facilities in the country to cure this defect. After much prayer and research, Children’s Hospital of Philadelphia became the obvious place for our family in order to save Freddie’s life. It was made clear to us that not only would he need his full repair., but additional surgeries would be required during his life to replace his conduit, and address any other repaired that might be required.
Freddie was born August 5, 2005, but after 11 days in CHOP’s ICU he was released only to be admitted to Johns Hopkins Hospital 2 weeks later for failure to thrive. A feeding tube was placed in order for him to gain enough weight for his full repair, which took place on December 22 2005, under the expert care of Dr Tom Spray. After 5 ½ hou
rs in the OR, including 19 minutes under circulatory arrest, where he was cryogenically frozen, Dr. Spray emerged to utter the best words Melanie and I had ever heard: “he’s fine, everything went well”! It went so well in fact, that the Assisting Surgeon later confided to Melanie and I that for a surgery of this magnitude, it was outcome they had all year.
When Freddie was just over three at a routine follow up a pseudoaneurysm was diagnosed via echocardiogram. A cardiac catheterization ensued and confirmed a pseudoaneurysm.
Freddie underwent a homograph conduit replacement on October 20, 2008, again under the expert care of Dr Spray at CHOP. Due to the amazing network of physicians and all staff aat CHOP, we have been blessed that Freddie has had no restrictions of any kind, and in addition to a great scholastic experience to date, he has been able to play recreational soccer, flag football, baseball and basketball.
Just recently, Freddie had his 3rd open heart surgery to replace his homograph conduit on February 6, 2018. He did develop a pneumothorax postoperatively and needed a chest tube placed at bed side. Amazingly, he was discharged 74 hours after surgery.
On 10/26/2015 our 3rd child, Nicholas was born also with Tetralogy of Fallot that was diagnosed at a 22 week fetal echocardiogram. Nicholas was born in the SDU at CHOP and became symptomatic of heart failure at 2 weeks of life. Nicholas was also admitted to Johns Hopkins for failure to thrive. We gave Nicholas fortified breast milk thru the bottle. He had his full repair at 6 weeks old at CHOP by Dr Spray. He is currently undergoing speech therapy for speech delay.