February 7-14 is Congenital Heart Defect Awareness Week. To help raise awareness, spread knowledge and share the effects of this disease, Jayme of The Paper Deer Photography Blog, Christie of Lemon Squeezy Home and Kierra of The Irvine Home are each sharing one story of a child with CHD every day to showcase the trials, triumphs, journey and heartache of this devastating disease. We invite you to read and share this project to further our voices. Thank you. #FacesofCHD
As of end January 2014, our girls are almost 9 months old and we are located in NYC.
We found out we were pregnant with twins and went to get a routine anatomy scan. That anatomy scan changed our lives forever. We were told that our girls would need Open Heart Surgery as soon as they’re born because they both have a rare heart defect called Tetralogy of Fallot. We started to learn about CHD, congenital heart defects. Some are more severe than others and we were just praying that everything would work out.
Our girls, Selena and Jasmine Tsai were born on May 1, 2014. Selena was the Pink Tet baby, meaning that her condition wasn’t terrible but she just needed to stay monitored. Jasmine was the Blue Tet baby with Pulmonary Atresia. She needed to be quickly put on breathing tubes and Prostaglandin, which helped her condition.
On May 15th, only 15 days old, Jasmine had her full repair Open Heart Surgery. She was recovering well until she developed irregular heart rates called arrhythmia. It can be deadly so she had to get three cardio-versions to get her heart rate regulated. Eventually her heart rate got back to normal with a combination of medications and was able to come home in 35 days. After only being home for two weeks, Jasmine woke up one morning pale and lifeless. She was rushed to the hospital and we found out she was having the deadly arrhythmia again. She was re-admitted for 6 more days until they were able to find the correct combination of medication again.
After a few more weeks, on July 31st, 1 day shy of 3 months of life, it was finally Selena’s turn to get her full repair Open Heart Surgery. She recovered quickly and was able to come home in 7 days. Currently, the girls are thriving at home but are a bit delayed with their milestones. They are getting help through Early Intervention Services to get them up to speed with “normal” babies. Per the latest cardiology appointment, Jasmine will need another procedure perhaps in a couple of years, then both girls will need a final procedure between 10-18 years. For now, we are enjoying our beautiful girls and taking it one day at a time!
What does CHD Awareness mean to me? It was a traumatic experience to find out that our girls have a rare heart defect. We had a very rough pregnancy because we faced a terrible decision that could have ended in termination. If I was aware about CHD before the pregnancy, it wouldn’t have been so much about the “unknown” and instead we would have focused on how to fix the problem. I want everyone to know that: Just like there is cancer and diabetes, there is CHD! I wish the media would get more involved and I am doing all I can to help spread CHD awareness. #1in100 and in our case #2in100
– Roxanne (Selena & Jasmine’s mom)
Our story was in the NY Daily News HERE
HERE is a YouTube video documenting the pregnancy and girls’ surgeries.
Selena and Jasmine were featured in the Heart Heroes of the Month blog, HERE.
We can also be found on instagram @ecuachic17
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