I am so glad that I find this site last night. Of course, I wish I have find it earlier. And Shae, I am everything is well with you.
I am now at age 34. I just found out the I am diagnosed with ASD back in June for my general checkup. On the same day, my husband was sent to ER and I had to take care of him for a week. It was just a very unpleasant experience.
When I first learned from my cardiologist about my heart disorder, I was told that this could not be waited and procedure/surgery has to be done this year. She said I could not be pregnant at this time. I was totally freak out and thinking that it sounded very serious and that I could die any moment though I wanted to enjoy life a bit before the surgery and thinking to postpone it until next year. I hate to go to hospitals. I afraid of needles and everything that's surrounding it. Unfortunately, god has played a joke on me. Anyway, with encouragements from my family, I finally contacted my cardiologist to perform the TEE procedure. It's a procedure where they get to see a clear image of all the position of the valves and the size of the hole. Prior to that, I have done an echo. I was told that the size was 1.6cm. It sounded very scary since I am a petite person and my heart is very smaller. Anyway, two days before the TEE procedure, I found out that I was 5 weeks pregnant. I am so surprised that out of those doctor appointments, I've never been asked if I was pregnant. Anyway, I messaged my cardiologist immediately. she said in this case, we'll have to the the surgery soon before the baby grows bigger. However, she switched to MRI instead of TEE. A few days later before my MRI appointment, she called again and told me that MRI wasn't an option either after consulting with the high risk OB. I started to get a little bit of frustration and wondered if she knew her stuff??? I went to see my OB and my OB suggested that it was somewhat risky and that I should considered my health first since the pregnant was not planned. Although I had not thought about having babies at this time, since it happened, I really wanted to keep it. But with all the frustration (the ASD and pregnant), I felt very sick. I couldn't sleep and throw up everyday. I really affected my work and I felt like I was a dead person. I consulted with my cardiologist, she said it should be fine to wait after giving birth for the ASD closure because I was totally health. With medicine along the pregnant, there should be any problems. My husband was extremely worried about my mental health. He knew that I could not swallow pills, etc. He suggested me to terminate the pregnancy. I felt confused. The first time when I met with her, she told me that it couldn't be waited or now she said differently. My boss suggested me to ask for second opinion since my cardiologist told me different things every time when I met with her, so I asked to schedule a consultation with her and the high risk doctor. However, when my husband and I arrived to the appointment, it was only my cardiologist was there. She said the same old thing that I am very very healthy and that 2cm of a hole is absolutely not a problem. I just need to take pills through out the pregnancy and might need to go to the hospital for IVs or bed rest. I almost fainted. When I asked her statistics about the number of ASD patients with successful labor, she said she didn't know and I was her first patient with this issue. Her last word was to have me keep the baby. And was told that I could meet with the high risk OB after 12 weeks of pregnancy. I was once again very frustrated since I could not find out any new information and not able to discuss with the high risk OB. At the same time, we felt like she just want me to be a tester, to be her first pregnant patient with ASD. She mentioned that the hold is small, so most likely, a procedure is all it is needed. I know it will be more complicated to terminate the baby after 12 weeks. My husband and family members were extremely worried and of course, we lost confidence in her, but couldn't do anything. I didn't want to change doctor since she was just my cardiologist and not the surgeon perform my procedure or surgery.
I finally recovered from the pregnancy termination. Trust it, it was very sad. I wish I have found this site and knowing that a lot of people with large ASD are able to go through labor successful. I could have kept my baby!!
I went for the TEE procedure two days ago. Gosh, I almost died from the TEE procedure. However, the most depressing thing is that I was told that the hole is 2.8cm. I remembered I was told that the hold will not grow. How could it increased from 1.6cm to 2.8cm in less than two months. She said the two valves might not be long enough for the procedure (tube going through the tight) and the open heart might be the only option. She will have to have further discussion with other cardiologist. When I asked why was it better than it was shown on the echo, she said there were much difference. Oh my god, 1.6 versus 2.8cm..it is more than 1cm difference. Once again, I was very frustrated. I feel that the worst thing is that you have no confidence in your doctor. Why am I so unlucky??? Anyway, I am just waiting for result. I know for sure that I will have to do the open heart surgery. I heard that there are two types, does anyone out there know what are the choices and which one is better? If a surgery is a must, I'd rather have it sooner than later. The waiting period isn't fun at all. Though it's scary, there is no other option. I can now only persuade myself that I am very lucky because I am giving a second chance to life if I choose to do the surgery. I will sure enjoy my life and spend more time with family after the surgery. Also, is it normal to have chest pain and shoulder pain all the time?