Our team is raising critical funds for congenital heart defects! Congenital heart defects are the most commonly occurring birth defect, affecting approximately 1 in 110 babies born, or a child born every 15 minutes. Congenital heart defects are the leading cause of birth-defect related mortality.
Funded research is making a very big difference in the lives of CHD patients, helping to reduce incidences and increase survival, longevity and quality of life. Research has made a very big impact, and with survival and longevity increasing, even more research is needed to help address lifelong challenges that CHD patients will face. Every dollar in support of The Children’s Heart Foundation helps to further their mission: to fund the most promising research to advance the diagnosis, treatment, and prevention of congenital heart defects.
Please support our team, join us for the Congenital Heart Walk, or both!
Here is our story
In June of 2018 our amazing son Dante turned 3 years old. We celebrated by a trip back to Texas (we were living in Georgia at the time due to Daniels work) to spend time with family and shower him with birthday love. We put off his 3 year well check a few weeks because we had no concern of his health. We were under the impression we had a happy, healthy young boy on our hands, we had no reason to think otherwise. We had two anatomy ultrasounds while we were pregnant with Dante and he passed with flying colors both times and had shown no outward signs of any problems. We arrive back home and I make the appointment for the end of June and we resume our daily routines. At the well check I got a very uneasy feeling when his pediatrician spent a long time listening to his heart, having him lay down and sit up while listening. No one had mentioned a mummer before and his doctor thought it was innocent but went ahead and put in a referral for an echo. It takes a couple of weeks before we can get in for the echo so we wait impatiently for the appointment. Appointment day arrives finally and it is a surreal experience. Dante was a champ, he worked with the techs and remained calm. Since our doctor thought it was an innocent mummer, she was hearing she didn't include a referral to speak to a cardiologist so when the techs go get a second set of eyes, then take us to a different room with a better monitor I just knew something was wrong. The worst part was we couldn't speak with anyone right away to find out just what was wrong. We leave with reassurances that we would be back and they were going to contact his doctor to push through a referral for us. It was surreal. Insurance red tape at its best left me shaking and trying to hold it together so I didn't worry our son. As soon as we get home, I start trying to call his doctor so we could figure out what exactly was going on. It took hours to finally be told he had a large hole in his heart and because of where it was located, somehow was not picked up in his anatomy scans in utero. Turns out Dante was diagnosed with Sinus venosus atrial septal defect (SVASD) with partial anomalous pulmonary venous return (PAPVR). After our referral went through it was a whirlwind of appointments and speaking with cardiologists and eventually open-heart surgery just 3 months after his diagnosis. They recommended not waiting too long for surgery due to the fact the right side of his heart was already severely enlarged from the extra work it had been doing for three years and they didn't want to wait until we started experiencing any complications with his heart. So, September 4th 2018 we sent our happy, smiling, laughing boy back for open heart surgery and it was probably the hardest thing I’ve had to do. They try to prepare you for what you will see when you finally get to see them after surgery and no matter how much they tried there is no preparing for what you see. The first 24 hours or so after surgery were miserable. He hurt, he couldn't breathe, we couldn't hold him because of all the wires and tubes not to mention the pain it would have caused him. Finally, we start to see some improvement and it's slow going but we start to see our Dante again. The chest tube was very painful for him so when they finally pulled the chest tube out on day 2 or 3, we finally got him up and walking just a little bit and by day 4, later in the day we were released to go home. His follow-ups were good and the doctors had no concerns. He was cleared with no restrictions at 6 weeks after surgery. At the time we thought all was well and all of this was behind us. We moved to Texas in August so we set up our year follow-up with his new cardiologist and she heard a mummer. We get the echo done and it is showing a hole in his heart again measuring approx. 5.4 mm at the bottom of his patch from open heart surgery. We went for a follow up with Texas Children’s in Houston and they believe that they will be able to close this hole via cardiac catheterization this summer (summer 2020). He remains very active, has no complaints and is a very happy, otherwise healthy little boy.