“There’s something wrong with your baby’s heart.”
Those words mark the start of our journey into the world of CHD. From the day of our 20 week scan up to my induction and Sebs arrival into the big bad world, we would research day and night to ready ourselves for what was to come.
We were told we had 3 choices.
We could abort him. I would give birth to him and they would take him and stop his tiny heart.
We could wait until he was born and they could stop him from being in pain as over the next few days or weeks… he would slowly pass away.
Or we could give him the chance to fight.
We chose to let him fight a battle that not even an adult would welcome. We did this because we have hope. Hope that Seb will be strong.
Strong enough too make it past the first open heart surgery that was predicted to be done when he was only a few days old…
Strong enough too make it past the second open heart surgery predicted to be done when he’s only a few months old…
Strong enough too make it past the third open heart surgery at around only 4 years old…
Strong enough too make it past all of the complications in between… because we were told nothing would be straight forward… nothing accurately predictable.
Then… after all of this… we were told that if he did fight and make it through… he would only make it until the roughly estimated age of 14.
At roughly 14 years old. We are expecting our sons heart too start too fail. He would need a doners heart too survive. A rare gift that we pray will be found in time.
We were told we may bury our son. But no doctor ever said,
“You WILL bury your son.”
And he is fighting with all his heart, no matter what condition it might be in. He has made it past his first open heart surgery and we are awaiting the next. Sebastian was born on the 23rd of December 2015. As I write this it is the 16th of February 2016. We aren’t expecting to make the journey home for at least another 4 months.
Our lives may have been uprooted… and we may be hours from home… but our whole world lays in that hospital crib. And he’s a warrior like no other… he is the face of CHD. Our HLHS superhero.
Our boy, born with half a heart, is fighting back and he is showing everyone out there, that no matter what… there is always a reason to smile. <3
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