My Baby Has Congestive Heart Failure

Congestive Heart Failure. That’s an old-person disease, right? I might have expected to hear this diagnosis while accompanying my grandmother to a doctor’s appointment. I never expected these words to describe my three-month-old baby boy. 

Welcome to Episode 52 of Redeeming the Chaos. 

I’m your host, Laurie Christine. I’m a mom of 4 boys, an author, a Bible teacher, and a certified Biblical Parenting Coach.

This is the podcast for moms who may feel a bit frazzled and overwhelmed by the responsibility of raising boys. If you want your boys to grow up to be strong,  courageous young men who are fully committed to following Jesus, this show is for you. 

I’d love for you to join me on this wild, wonderful, chaotic adventure of raising courageous boys and connecting their hearts to Christ.

Elliott’s Heart Story

I realized, after two years of podcasting, that I have never shared the story of my oldest son Elliott’s heart condition. I’d like to tell you that story today. It’s a story of heartache, healing, and hope.

After a three-month well-check, we learned that our oldest son, Elliott, had been born with a rare, congenital heart defect called Double Outlet Right Ventricle (DORV). His aorta and pulmonary artery were both coming out the same side of his heart, and there was a large hole between his ventricles. To explain it simply, Elliott’s red (oxygen rich) blood and blue (oxygen poor) blood were mixing together, his lungs were working too hard, and his little heart could not pump enough oxygen to his body. 

Elliott’s heart was failing and surgery was imminent. We didn’t know it at the time, but Elliott would need not one, but four open-heart surgeries before his 5th birthday.  

You never really think you will be “that family.” When you see friends going through a difficult situation, it’s easy to secretly breathe a sigh of relief and think: “I’m glad it wasn’t me… I could NEVER handle something like that.” And yet, when it is you, when life doesn’t turn out exactly as you had hoped, when you are the one that received the dreaded phone call, somehow everything is different. Everything changes. 

I Knew God Could if He Would

Elliott’s first surgery took place when he was only four months old. Then again at one year, two years, and four years. Before each surgery, we were told this would be “the last one,” only to find out another was needed. I was tempted, at times, to trust more in the surgeons than in God. I knew that the surgeons desired to fix Elliott’s heart… they wanted the same outcome as I did. The question was whether or not they had the ability to repair his heart. God, on the other hand, being all-powerful, was able to heal Elliott and repair his heart. But whether or not He would, I didn’t know. 

I knew the surgeons WOULD if they COULD, and I knew God COULD, if He WOULD. But God isn’t only all-powerful. He is also loving and good. And so, I continued to trust in the only One I knew could ultimately heal my baby. 

(If you would like to read more about the medical details and timeline of Elliott’s surgeries, as well as look at pictures, visit my blog post from a few years ago:  www.LaurieChristine.com/miracle-baby)

God Will Give You More Than You Can Handle

I know that many people have gone through much worse situations than I have. And I know others of you may read about my story and look at the pictures of my baby hooked up to endless tubes and wires and machines and think: “I’m glad it wasn’t’ me… I could NEVER handle something like that.”  But the truth is, God puts us all into situations that He knows we can’t handle… because He wants us to cling to him. I’m sure you’ve heard the saying, “God will never give you more than you can handle.”  Well, guess what. It’s not true. God absolutely gives us more than we can handle so that we will learn to trust His power and His goodness, and that His name might be glorified through it all. 

Before we knew about Elliott’s heart condition, I too would have said: “I could never handle something like that.”  But God gives grace and strength exactly when we need it. Not before, not too much, not too little.

As I look back on each of Elliott’s heart surgeries, I actually believe it was God’s grace protecting us from knowing too much at one time. If the doctor’s had told us from the beginning that Elliott would need four heart surgeries, I think we would have been very overwhelmed, and full of despair. But God, in his mercy, chose to only allow us to see only the next step of our journey. He showed us the next challenge when we needed to face it, and he gave us grace to go through that challenge.

Like the Israelites in the wilderness who had to trust God to provide manna for them one day at a time, so too He gave us exactly what we needed for each step of the journey. No less and no more.

I’m not saying it was easy. I’m not saying we weren’t scared. There were definitely times that we didn’t know what the outcome of Elliott’s life would be. But the peace of God was greater than our fears.

Do Not Be Afraid

During those years, I printed a collection of scripture passages from the Bible that I memorized and recited over and over, reminding myself of God’s promises:

“Don’t be afraid… I am with you!” (Psalm 41:10)

“I won’t be afraid… You are close beside me!”  (Psalm 23:4)

“Don’t be anxious about anything… I will give you peace!” (Philippians 4:6-7)

Many times throughout the Bible, God commands us not to fear. Why? Is it because there’s nothing to be afraid of? Is it because He’s going to take away all our problems? Time after time, the reason God says we don’t need to fear is because He is with us!  Because God is with me, I am strong. Because God is with me, I have overwhelming peace. Because God is with me, I will take the next step and breathe the next breath. God promises never to leave me. He will walk with me and hold my hand and carry me when I can’t walk any further. 

I’ve included a set of printable verse cards in the show notes that all focus on not being afraid.

CLICK HERE to download a set of free, printable “DON’T BE AFRAID” verse cards!

God Healed My son’s Heart

As I mentioned before, I’m not going to go into all the medical details of Elliott’s journey, but I will say that during his 3rd open-heart surgery, the doctor’s at Boston Children’s hospital were finally able to repair Elliott’s heart.

(You can read a more detailed account of Elliott’s Heart Story HERE.)

Despite the ups and downs of Elliott’s first five years of life, his most recent seven years have been relatively uneventful, for which we give all praise to God! Elliott is doing very well right now (in 2022) and he has very few restrictions on life. At twelve years old, he’s a funny, smart, kind, energetic boy. He loves to build legos, solve rubix cubes, read, draw, and take apart electronic equipment. 

Elliott visits the cardiologist every six months for an echocardiogram (ultrasound of the heart) as well as an EKG and a checkup. Even though all has been quiet for several years, Elliott will likely need additional surgeries and procedures in the future. As he grows, parts of his heart may need to be replaced or repaired. 

What If… ?

If I allow my mind to wander down the paths of “what if,” I sometimes feel anxiety creeping back into my heart. At those times, I turn back to the only place I know to go for comfort: the Word of God. I fix my eyes on Jesus and I remind myself of God’s promises. Only God knows His plan for Elliott’s life and my job is to continue trusting that God’s plan and His care are best. 

A favorite quote of mine, from Hudson Taylor’s Spiritual Secret, has often encouraged me:

“The sweetest part… is the rest which full identification with Christ brings. I am no longer anxious about anything…for He, I know, is able to carry out His will, and His will is mine. It makes no difference where He places me, or how. That is rather for Him to consider than for me; for in the easiest position He must give me His grace, and in the most difficult, His grace is sufficient. So if God should place me in serious perplexity, must He not give me much guidance; in positions of great difficulty, much grace; in circumstances of great pressure and trials, much strength? No fear that His resources will prove unequal to the emergency! And His resources are mine, for He is mine, and is with me and dwells in me.”

Trusting God with my Son’s Heart

So, when Elliott was little, I had to trust God with his heart. But you know what? Nothing has changed. Back then, I was trusting God to heal Elliott’s physical heart. But today, as Elliott grows into a young man, I have to trust God with his spiritual heart. 

It’s not always easy. In fact, sometimes it’s one of the hardest things we do as moms… putting our children into the hands of God. But God loves our boys more than we ever could. He knows what’s best for them and he is working to draw them to himself. 

We talk a lot on this podcast about our responsibility as moms to teach our boys the Word of God and train them to live courageously for God’s kingdom. 

But in the end, only God has the power to save. Only God can change the hearts of our boys. 

Medical Details

I barely scratched the surface of all the details and ups and downs of Elliott’s heart story. If you’re the kind of person who loves to know all the medical details, read this blog post I wrote a few years ago, detailing the events of the four surgeries. You can see more pictures of Elliott’s journey as well.

Much to be Thankful For

Another cool thing that happened after Elliott’s third heart surgery, was our family was interviewed for the local newspaper. It was a Thanksgiving special and we had an opportunity to share how God had answered our prayers for Elliott’s healing.

You can read the news article and watch the video interview HERE.

God’s Faithfulness

Now, I just want to clarify something. I hesitated to say that we’re so thankful for God’s faithfulness in healing Elliott. 

Don’t get me wrong. We are absolutely thankful that God chose to heal Elliott, and we are absolutely thankful for God’s faithfulness. But, God’s faithfulness is not dependent on whether or not our son made it safely through surgery. God is faithful, no matter what!  Even if Elliott’s story had ended very differently, God is still faithful. He’s still on the throne and he is still good. 

We can trust Him with the hearts of our boys.

What’s Your Story?

Do you have a story of how God has worked in your son’s heart? Either physically or spiritually? I’d love to hear from you! Feel free to contact me HERE.