hypoplastic left heart sydrome — Blog

*a special post from a special guest* Hi there! My name is Courtney. I'm a daughter, sister, wife, and mother of two. Most people know my most defining role of the past three years is as a "heart mom," a mom fighting the world of congenital heart defects while encouraging her brave three year old in his fight against Hypoplastic Left Heart Syndrome.

Caysen was born in 2013 after a pregnancy that went smoothly until about 33 weeks. I began having health problems uncharacteristic to my norm, and after MRIs, spinal taps, extensive blood work and multiple specialists; it was determined I had optic neuritis. My body was attacking my optic nerves and taking my vision. After receiving my diagnosis, my mom turned to me and said "there's something special about this baby". It was literally attack after attack, and ironically we had NO idea of his heart defect until after birth. What foreshadowing that sentence had!

Caysen was born "healthy" and we took him home thinking our troubles were behind us. After 15 hours at home he began panting, and it was worrisome. We rushed him back to the hospital where I will never forget the NICU team coming out to us, shaking their heads and barely able to make eye contact with us as his situation was so grim. He was crashing and during the crash he had brain bleeds, liver damage, his lungs were sick, and his kidneys took a hit. This is where we learned of his diagnosis and that it was incompatible with life.

You see, HLHS essentially means half a heart. The three stages of surgery for it are called "palliative care". If he stabilized, he could potentially sit for the surgeries and have a shot at living a good twenty years or so with half a heart and then potentially need a transplant. There of course are many risks, but the other option was to let him pass.

It is here where we met some of the most encouraging nurses (Heather included!), and where we met doctors with such strong faith and hope in God that they would grab our hands and pray with us over his little incubator all while machines clicked and whirred keeping him alive and allowing him to heal and hopefully sit for his first surgery.

We have walked a long and grueling path over the past few years. Initially we were told Caysen wouldn't make it. God said otherwise. He had his first surgery, then we had a problem with his patched up stents in his heart at five months old. He crashed again. We were told the pump of his heart wasn't good. They told us then we would need a transplant. Then our cardiologist made a last ditch effort in the cath lab doing an intervention procedure and relaxed the heart. Again, God said otherwise.

After a grueling third open heart surgery and recovery, complications have now led to us being listed on the heart transplant list. We continue to recognize God's hand in everything and His perfect timing. God has the ultimate plans and holds our future. He has shown it time and time again!

Throughout our entire journey we as a family have learned so much about our faith in God. Just when you think you can't take anymore, you're beaten down from the journey and utterly exhausted - you will find God will give you exactly what you need to carry on. You may not know how, but when you least expect it God provides the way. We've learned so much about God's timing versus our timing, and how His timing doesn't always make sense but when we look back you can see how that timing saved us from another complication or difficulty. God is never late.

We have learned when the pain is just too much to bear, check your perspective. The greatest lessons often come during life's most challenging trials. What can you walk away with? Better perspective? Strength? A reminder to take things one day at a time? To be present in each moment, no matter where you are - even if living in a hospital away from your family - because we aren't promised anything and it's a blessing to still have your child? Find the good. Find the joy. Anne Lamott once said, "joy is the best makeup". Putting a smile on your face can change the whole outcome of your day. On the bad days you might have to look exceptionally hard to find the joy, but choose joy.

Praising God through the storm is difficult, but such an intense form of worship. When the world is crumbling around you, still praising Him and acknowledging His goodness keeps your mind and heart on track. It allows you to lean into Him in the valleys. If you can do this, the view from the mountaintop will be that much sweeter.

I would be honored if you felt led to follow and pray for Caysen's journey as we wait for a new heart. We can be found at Caysen's Heart Updates on Facebook. But most importantly I want to encourage you all today. Everyone has pain and suffering and turmoil, it's impossible to escape in this broken world. It's up to you how you choose to respond to it. I, for one, couldn't have made it this far without my hope in God and our future promises! Such a comfort to know He has this all figured out and a beautiful eternity is the end result!

“Yet what we suffer now is nothing compared to the glory He will reveal to us later.” ‭‭Romans‬ ‭8:18‬ ‭NLT‬‬

Update: When I contacted Courtney back on September 22^nd, I could’ve never anticipated what would transpire by the time this post was composed and published. When she sent it back to me, I knew it was perfect, but not the right time. So like all our posts, I waited for the Lord to nudge me when to share it. Allow me to share what occurred in the meantime….

The call came on October 13th. Caysen received his new heart in the early morning hours of October 14^th. He came home with his family on November 13^th. After a lifetime in the hospital, going home was a process. Courtney said, “Caysen spent the ride home telling us he didn't want to go home. I think he was confused as he just didn't feel like he lived with us anymore. When we told him Daddy would mow - his attitude changed completely and he was more than excited.”

I asked Courtney if she knew how many days of Caysen’s life have been spent in the hospital. She answered, “Hard to say. This stay was our longest at 184 days. Before that it was 86. Our NICU stay was 72. We had another at least 60 days inpatient between that too, and that might be minimizing.”

This little baby and his family touched my heart over three years ago. The optimism and strength at work in their life is evidence of their relationship with the Lord, their unwavering faith and trust in Him. From the earliest days of their hospital stays, Caysen’s room was filled with praise and worship music. It can be difficult to find something to praise the Lord for when nothing seems right, when your baby is in critical condition facing more unknown than known. But we don’t praise and worship because of our circumstances, we praise and worship for WHO GOD IS. We don’t let our circumstance define God. We let God define the circumstance. And we’ve had the blessing of seeing that demonstrated in The Allen Family.

I pray Caysen’s story brings joy to your holiday. I pray you are encouraged to see God’s hand at work in the trials. I pray your heart overflows with gratitude. And I pray this precious boy inspires you to enlist as an organ, eye and tissue donor. May Caysen’s journey in getting his new heart bless your heart this Thanksgiving.

“After transplant our life quality has changed SO MUCH. He is happy and chatty and interacts with people…….So thankful for life outside of a hospital. For God bringing us a happy heart to allow us more time with Caysen.”- Courtney Allen