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Sara’s Story – My Child Has a CHD

Stay focused on what you can control as opposed to what you can’t

At Sibley, we love sharing patient stories with our CHD community. While we often hear from moms sharing their children’s stories, we don’t often get to hear from moms about their experience learning that their child has a congenital heart defect. This month, as we celebrate Mother’s Day, we’d like to share Sara’s story, about when she learned that her daughter would be born with CHD and that in addition to becoming Sydney’s mom, she would become a Heart Mom, too.

Finding out there is something wrong with your unborn child is devastating. I felt very scared and isolated. Knowing that my daughter had CHD made it hard to relate to my friends who were having healthy pregnancies. I wondered if I should name the baby ahead of time, have a baby shower and make a nursery.

Everything about all of the new doctors and numerous appointments felt super intimidating, so one of the first phone calls I made to someone other than family was to another heart mom. Her daughter was born with hypoplastic right heart syndrome. At the time that she talked to me, her daughter was six years old and doing well. She told me to keep a notebook by my bed, so when I woke up in the middle of the night with thoughts or questions, I could write them down. Making this connection with another heart mom was very important during my pregnancy – although our daughters had different heart conditions, being able to speak to someone who had been in my shoes brought me great comfort.

Although there are a lot of support groups, it was hard for me to get too involved during my pregnancy. I didn’t want to get caught up in some of the sadder stories because I needed to stay positive and hopeful. My advice to expecting mothers going through this is to ask to be connected with another family whose child was also diagnosed during pregnancy, but is now doing well. It will give you hope to see a light at the end of the tunnel.

It’s ok to take each day as it comes. Sometimes the best I could do was get through one hour at a time. If you need help, don’t be afraid to ask for it. Taking care of yourself is important for you and your baby. I’d also advise heart moms to stay focused on what you can control as opposed to what you can’t. Yes, your child’s health is outside of your control, but you can control the type of care you are providing for him or her. Coming up with a plan for my child before she was born helped me feel more in control during a helpless time.

Finally: don’t Google things! Google can lead to a lot of unnecessary anxiety. If you want to learn more or have questions, write it in that notebook and ask the doctors and nurses around you. Sibley has so many wonderful cardiologists, so go to a few different ones and find one that you trust and connect with.

I wish I could tell you that it was an easy road for me, but it was hard. This part of my story is not necessarily the most encouraging part. I can tell you, though, if I could do it all over again, I wouldn’t change a thing. I did have a baby shower and I did make a nursery. I did name my daughter – her name is Sydney, and today she is a thriving five year old. I truly believe so much of who Sydney is because of the battles she had to fight early in life. She has taught me so much. More than anything, remember you are not alone.  #heartmom #chdmom

Sara also wrote an article about Sydney for CHD Awareness. To read more about Sydney’s journey and how she’s doing now, click here.

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