Congenital heart defect
Very quickly after finding out we were expecting our second baby we knew that something just wasn’t right. After many appointments with specialists we received the diagnosis for our little girl, Hypoplastic Right Heart Syndrome. Our baby would be born with severe congenital heart defects that would require multiple open heart surgeries in order for her to survive.
Have you ever heard that sometimes our minds will block out certain events as a form of a coping mechanism? I believe that is a real thing because I sometimes feel that that was someone else’s life, someone else’s hardships. I can barely remember the sense of fear and overwhelm. But looking back at pictures of my little one hooked up to countless wires, her drowsy little smiles when she was feeling good and the nightmare inducing cries from when she was in pain or afraid. The memories come flooding back and I thank God that we’re ‘out of the woods’ in a sense and still actively monitoring her condition. I think about the families hearing the same diagnosis today. Lord, comfort them.
Finding out that our baby would be born in a such a fragile state was scary to say the least. What made it worse was that we had little to no answers. We were told to look on the internet for our answers which led to more anxiety (if you’ve ever googled an illness or symptom you were experiencing you know what I mean). So we found a couple of Facebook groups of parents sharing experiences and asking questions about their CHD kiddos. At the time, when we were in the thick of appointments and surgeries, these two groups were very valuable to us.
It was in one of these groups that I met another CHD mom from a few states away who had a little girl just a couple years older than our baby. Her little one had already gone through two of the three surgeries to re-route the blood flow for hypoplastic babies. Her willingness to come along my side was amazing. She always encouraged me in Christ; at the time I was not a Christian but I was comforted by her words nonetheless.
Thinking back to our time in the hospital, the appointments, the fear, and worry made me want to write this blog post but I want to encourage and not add to the fear so here are a few ways this diagnosis was truly life-changing.
A new life
When we first heard the diagnosis along with the survival rate and what daily life could look like we began to feel a jumble of emotions that’s difficult to put into words; worry, fear, anger… BUT during these uncertain times I grew and my life has not been the same since.
I found Christ..
Yes this is part of my testimony of coming to the saving knowledge of Christ. It’s funny how many times you hear of someone being at the bottom of themselves in order to find the one who saves. That’s exactly what happened though. For the first time in my 21 years of life I truly thought about death. Not my death, but the death of my child and it wrecked me. I haven’t shared much about this part of my journey but I’ll be vulnerable now in hopes that if you find yourself in a similar situation learning of your child’s life threating diagnosis, you’re not alone.
I was convinced that my daughter wouldn’t live long after birth. I had a hard time connecting with her and being truly excited for her birth. I was afraid that I would love her so much that when I lost her I would be unable to love my other children and husband. Maybe I’d lose myself too much with the loss. I have a habit of overthinking, if you couldn’t tell. But God…
I was desperately looking for answers. Success stories, children born with HRHS that have lived into their adult years and are thriving, anything positive. While I did find many stories just like that I was still filled with fear. So, I went to the Bible. I’m not sure why that was my next stop. Maybe it was because I had attended multiple Christian schools growing and had heard about Jesus. Or maybe it was just simply Jesus pursuing the lost (this scenario is most likely).
Friend, if you don’t know Christ, seek him. He will give you peace. He gave me peace. I went through the rest of my pregnancy not planning for my daughters death. I had a strong sense of peace throughout all of her procedures and appointments. You can have that same peace.
I learned how to live in the present…
I have had peace throughout my daughters, yes, but that has not changed our reality of having a child living with severe defects on a major organ in her body. We had to literally wait until her heart got to a certain amount of ‘failure’ to operate. Talk about living every day like it’s your last.
We realized that healthy or not our lives are not our own and we are not going to live forever. Living for today and not letting worry or fear ruin the right now became more than just a few verses in the Bible (read Matthew 6:24-34).
We can be resilient…
Simply put, we can do hard things. We can walk through the unknown while we put our trust in the Lord. We can handle the burden of caring for a sick child with the strength given to us by the Holy Spirit.
If you don’t know Christ.
I realize that all of my encouragement revolves around Christ but I hope you saw the difference in my thoughts and heart after he offered me a better way of thinking, of living. He offered me salvation and in turn given me the opportunity to raise my children to know Him. I truly want that for you and your family. To know Christ and to feel the life-changing effects of His salvation.
If you don’t know Christ a lot of this won’t pertain to you but if you have questions or want to come to Christ for His saving power you can refer to my blog post that I recently wrote titled What must I do to be saved? or reach out to me through email.
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Christian lifestyle blog written by a millennial mom.
The Millennial Mom 
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