Disclaimer: This post has been written after details, people have been confirmed. I am not the official advocate on this case, but was approached that I would use my voice in coordination with the parents, advocates and overall general CHD community. I receive no compensation or benefits with this content generated.
From the site:
Aubrey Hope was born on 8/15/11 at 31 weeks gestation. She was immediately lifelined to Riley Hospital for Children where she spent 11 weeks in NICU. She was born with Tetralogy of Fallot with severe pulmonary stenosis, scoliosis, hemivertebrae, bilateral clubfoot, and missing ribs. She was also born with contracted lower limbs and a diagnosis of arthrogryposis multiplex congenita (Though now some doctors have discussed Larsen’s syndrome with us). She also has severe reflux and mild chronic lung disease. She also has the best smile in the world.
At one of the first appointments during gestation of a child, we get to hear and often times; see the rapidly beating heart. The galloping pulse is the sound that shuts out the rest of the world. Our heart recognizes that sound as our child and our spirit lurches to protect and nurture that tiny being nestled under our heart.
Through the many doctor visits during the pregnancy, the heartbeat is picked up and the sound filling the room is what steadies our natural fears and concerns of our child. It reassures us that in a short time we will be in a delivery room holding our freshly bathed infant, kissing the impossibly soft skin on their cheeks. It gives us confidence that one day we will be watching the unsteady toddle as our baby takes its first steps from our arms. It convinces us that one day that child will go from walking through the doors of their first day of school and its not beyond our imagination to see that kiss binding them to another in marriage.
Yet, what if that sound showed a fault? What if the sound of a heartbeat was the very sound of sand slipping through an hourglass and we didn’t know when that was going to run out; we were just told to prepare?
The image of kissing your infant is complicated by wires, tubes and machines. The likely hood of watching them toddle away begins to disappear from our heart’s mind and we can’t see much beyond that? The worry of what if I blink, sleep or turn away? Will it all be over?
Now what if there was a chance?
A chance to live. A chance to love just one more moment longer.
You’d take it. Regardless the cost. You’d break every barrier. Defy every boundary. Give everything you have past the point of sense. Just for the moment to love one more minute. To touch that impossibly soft skin beyond the wires and dream that one day that child will toddle from your heart.
That’s what Aubrey Hope’s parents have done. They have given everything past the point of sense. Broke every boundary. Lost a job. Yet, they haven’t lost hope and now their moment has come.
Valentine’s Day and all the sentiments of hearts, becomes a reality. This is the day that Aubrey’s heart becomes renewed. Surgeons will gather to give her a chance to keep beating. To live. To love.
Expenses have piled up and this Valentine’s Day I ask that you send the most important message of love that you can. A message that says you understand the hourglass that is running out and that you hear the parent’s desperate prayer to keep their child in the best care possible.
Please visit the Aubrey Hope Site and make a donation for A Valentine’s Day heart. I know times are tough right now, but miracles never make sense. It’s the definition of a miracle and Aubrey’s parents believe in miracles. After all…as I write this Aubrey’s little heart still sings to her parents.
You can make your donation here
Thank you on behalf of all the parents who face CHD and other infant illnesses everyday for believing in a miracle and doing your part to make the unbelievable come true with your time, voice, money and heart!