Our youngest daughter Celeste was born with complex congenital heart disease and at 19 months we were told that without a heart transplant she would not survive. The journey has forever changed our marriage, our family and the way we meet life. It is one of the best-worst things to ever happen to us.
November 12, 2016
My heart aches for you and the depth of your grief and loss. You have faced the inconceivable; the loss of your precious child. Last night you arrived home to an empty little bed, to toys that will sit unplayed with, to a home that is unconscionably quiet.
An Unimaginable Loss
The sun, the moon, and the stars in the orbit that is your life are no longer visible. I’ve danced on the edge of that chasm of grief and the unknown over the past six weeks as our daughter came dangerously close to leaving us, too. Why one child is spared while another must leave is beyond my comprehension. Yet I want you to know that we grieve alongside you. We hold you and your family in our heart and in our thoughts and prayers.
You are the greatest of heroes. You have made the ultimate selfless act to honor the life of your child, and in doing so have delivered the greatest miracle in the life of our 20-month-old daughter.
A Broken Heart
As we continually remind her three roughhousing toddler siblings, Celeste was born with a “broken heart.” Her complex congenital heart disease is a devastating medical condition that robbed her of most of the normal baby and early toddlerhood experiences we parents take for granted. Her first surgery was required within hours of being born and she has endured more medical procedures than most will experience in a lifetime. Her father and I sat by her side for months in cardiac intensive care, fifteen hundred miles away from the rest of our close-knit family. Multiple surgeries bought us time, but the truth was that she remained a very, very sick warrior princess.
A Fragile Hope
We were gifted a single year of absolute bliss with our feisty, spirited Celeste home. Then six weeks ago our world imploded. She was medevaced back to Children’s Hospital of Milwaukee and the cadre of outstanding medical superstars who had brought us this far.
But this time the news was devastating.
Celeste was in complete heart failure. A heart transplant was her only hope for survival. Extremely fragile, she was unable to leave the hospital requiring strong medications and meticulous medical support to keep her alive.
And then, only three weeks after being actively placed on the heart transplant list, Celeste received the most blessed gift one can possibly conceive.
A Gift of Love
New life, in the form of a pristine, healthy heart. One with four chambers, valves intact, opening and closing tightly, blood no longer sloshing and mixing together. Her pacemaker is gone. Her color is healthy. She is no longer dependent on oxygen and the doctors tell us that all the signs are positive.
You are responsible for this miracle. We thank you, although these simple words can hardly convey our deepest gratitude. As parents you have dared greatly. You have risen valiantly above your own heartache to bestow the most selfless of gifts…a second chance at life for Celeste.
Love never dies. Our promise to you is that we will be worthy stewards of this tribute. Celeste will grow up knowing that she not only carries the potential to fulfill her own destiny on this incredible journey called life, but the intangible potential and glory of her angel donor.
May they both shine brightly, and together accomplish more than they ever could apart.
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Our family payed forward this selfless gift of a heart for Celeste by becoming organ donors ourselves. We hope you will consider joining us.
Currently, nearly 2,000 children under the age of 18 are on the national transplant waiting list.
1,898 children received transplants in 2015.
There were 939 pediatric organ donors in 2015. Although they ranged from newborns to age 17, most were age 1 to 11. 150 pediatric organ donors in 2015 were babies under the age of 12 months.
Most children under the age of 1 year are waiting for a liver or a heart.
Most children age 1 to 10 are waiting for a kidney or liver, followed by heart.
Most children age 11 to 17 are primarily waiting for a kidney, followed by a liver.
Pediatric donation is different from adult donation. When a potential donor is under the age of 18, the parent or legal guardian always has to authorize the donation. In many states, people younger than 18 can sign up as organ donors when they get their learner’s permit or driver’s license. However, in most states if the child dies before age 18, the parents must make the donation decision.
For more information about organ donation, please visit: http://organdonor.gov/index.html.
Now I would be honored to hear from you. Are you an organ donor?