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Learning about Megan’s CHD

Thank you to my mom, for sharing her story about finding out I had a congenital heart defect. Here’s her story:

 

Nothing is quiet like the feeling when you’re pregnant with your second baby. We already had a son, so I was really praying for a daughter. In my eyes, that would make our family complete. A dad, a mom, one son and now a daughter. I could not be happier!

We lived in New Jersey at the time. I had a doctor’s appointment to get a sonogram to hear my daughter’s heartbeat. The sonogram was picking up a strange sound. It was an extra heartbeat that was out of sync. I looked at the sonographers face and immediately noticed that he looked concerned… I thought, oh my goodness, two heartbeats?! I am having twins! My grandmother was a twin and my mom had told me it skips a generation so twins were a possibility. But, that was not it at all. Instead of twins, the sonographer was picking up a only one baby with a complete heart block.

We were sent to a pediatric cardiologist in Philadelphia, PA. He confirmed a major heart defect in my daughter. He informed me she had a congenital heart defect called ventricular inversion. The two lower chambers of her heart were switched. He told me that he wasn’t sure my daughter would make it to birth. I was devastated to hear this news. I was 23 weeks pregnant and he wanted me to consider having an abortion. In New Jersey, 24 weeks is the last time for a mother to have an abortion by law. I left the doctor’s office broken hearted and I cried all the way home. I had heard about abortions but never dreamed I would be put in this situation. I didn’t know how to deal with this information. My mom was in Houston and I felt like I had no one to talk to. My mom suggested calling our minister at the Methodist church. I felt like I needed to talk to someone who might give me the right advice.

That week I made an appointment and went to see my minister. He was a very kind man and he gave me the advice I needed to hear. He told me the God in heaven is not judgmental and that when the time came for me to make my decision, I would know what to do. He said God would be compassionate and not angry over my decision. The minister said to gather information from the doctor and then make the best decision I could at that second in time. He reminded me to never look back, second guess my decision or be upset over my decision.

I went back to see my doctor. He sat me down and told me he had reconsidered and he was giving my daughter a 70 percent chance of making it to birth. I told my husband that was all I needed to hear. Seventy percent was good news and all my daughter needed was lots of prayers. I wanted to keep my daughter.

During this time, we were in the process of moving back to Texas. My husband had taken a new position and we were moving back home. The specialist told me the best thing we could do was move to a major, medical center like Houston. My parents lived in Houston so we decided I would live there with my son while my husband lived in Austin. I was sent to a high risk, OBGYN. And then I was sent to a pediatric cardiologist.

We met with the cardiologist and she was not sure our baby would make it through birth. I once again was devastated. I tried to separate myself from my baby and being pregnant at all. I did not want to become attached even though I already was. At my next doctor’s appointment, she told me my little girl was a fighter and she was going to make it. That was all I needed to hear that my daughter would make it.

Want to learn more about CHD? Click here. Have a questions for me or my mom? Leave a comment below.

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3 Comments

  • Reply charlotte

    Hi,
    I came across your blog through Instagram. I am going to need a heart transplant eventually when my heart failure gets worse, I am only 20 and I’m trying to find people my age that have been trough this.

    Have you been given any indication of if you will ever need another heart transplant? my concern of being young is that there aren’t many statistics on how long young people live with a second heart. Also have you ever made contact with your donors family?

    Thanks so much for your blog!

    February 23, 2017 at 3:08 pm
    • Reply Megan

      Hi Charlotte,
      I was 14 when I received my transplant and while it was scary at the time, I’ve done so much better since. I haven’t had any indication that I’ll need another transplant, but as your mentioned, there isn’t too much information out there. I do know a lot of people living 30+ years with their new heart. I do my best to stay healthy and stay active and try to live in the now and not dwell on the what ifs of the future. Sadly, I haven’t reached out to my donor’s family. My mom has written them but we didn’t hear back. I do plan to write them some day. It’s just hard to put a thank you into words. Thanks for reaching out and please feel free to email me if you need to chat with someone who’s been there! Xoxo

      February 23, 2017 at 3:15 pm
      • Reply Charlotte

        Thank you so much for your reply! Yeah I try not to dwell on the future, I just hope I can make this heart last as long as I can before I need a transplant! I hear amazing stories about peoples life afterwards but I’m doing okay for now. Its nice to hear about real people that have had transplants rather than looking at statistics that say you’ll be lucky to have 5/10 years!
        Xxx

        February 23, 2017 at 4:36 pm

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