Olivia, born 2013
During my pregnancy I was never told anything was wrong with my daughter’s heart. When Olivia was born, she was having trouble breathing so she spent three days in the NICU. She wasn't eating very well but enough for them to send us home and I was told that she was healthy. After being home for two days, she completely stopped eating and became very lethargic. We quickly found out that she was becoming dehydrated and called an ambulance.
When we were at the hospital they told us they were going to check her heart just in case but that they did not hear a murmur so it was unlikely. After Olivia had her echocardiogram, we were told that she had a few heart defects. The one that was causing the problem was Coarctation of the Aorta and she also had a medium sized ASD and VSD. Her body was in shock from being dehydrated so we had to wait six days for her to be stable enough to go into surgery. When she was eleven days old she had her surgery which was the longest day of my life. She didn't have open heart surgery but she had a thoracotomy surgery (her incision is on her left side below her armpit.)
After over three weeks of ups and downs in the hospital (lungs collapsed twice, chest tube taken out too early and major feeding difficulties) we were finally sent home but with an NG feeding tube. Olivia needed the feeding tube for over six months and it was extremely difficult.
Olivia has come a very long way and at her last cardiology appointment, her coarctation repair looked great. It's growing with her body and wide open like it should be. Her ASD and VSD are smaller but not completely closed. It's still up in the air if she will need surgery for them or not but were told we when she is around four we will probably know. She would either need open heart surgery or catheterization. I'm hoping with time they will close and it won’t be an issue. She amazes me every day and I'm so proud of her, she is a very strong and brave little girl.
UPDATE: October 2017
Olivia is now 4 years old and at her last visit we found out that her ASD and VSD are so small that they are no longer an issue! The not so great news was that she has since been diagnosed with Bicuspid Aortic Valve. She will need another surgery but hopefully not until she's adult. She is super smart but needs some extra help at school with her speech and balance/coordination so she gets speech and physical therapy once a week. She's still a super picky eater but she's growing on her curve as expected. She is doing really well and has no restrictions, we are very happy with how far she has come.
Story by Melissa, mom to Olivia - Connecticut