Life is not about waiting for the storm to pass. It’s about learning
to dance in the rain
Julia Grace Childress, Trisomy 18, Burke, VA, 11/30/2010 – 12/16/2011
Please visit https://jennychildress.blogspot.com to read more about Julia!
Every Day is a Gift.
Julia Grace was born on November 30, 2010, at 37 weeks and 3 days gestation by scheduled c-section. We knew that she had several anomalies and her docs suspected trisomy 21, Down Syndrome. She was born with the full expectation that she would be immediately stabilized/taken to the NICU and evaluated for cardiac surgery. When she was born, this is exactly what happened. She required bi-pap for a few hours but after that she was only on oxygen. On her second day of life, Julia was diagnosed with full trisomy 18. We were devastated and in total shock and had only a vague understanding of the diagnosis. We believed it to be completely fatal. Our doctors recommended that we take her home on hospice and cherish our few days together. Cardiac surgery was no longer offered as an option. Between her trisomy diagnosis and her heart condition (confirmed after birth), no one expected her to live beyond a few days. We believed them and took her home on hospice care.
Julia’s Dad and I took her home to be with us and her brother and sister. All of our family members traveled to meet her for what we believed to be the one and only time.
We were already in love and enamored with our Julia. As we learned more about t18, we marveled that she had been strong enough to make it so far. Julia had more surprises for us. She began eating more and more formula (orally). She did not have apneic episodes. She was breathing comfortably. As days and weeks passed, she slowly grew and became more interactive. By 4 months she began to smile! It was truly the best day of my life! We were able to get out with her more and more and to even travel. She began receiving OT and PT services through Early Intervention.
She met her 6 month goals (!) and was learning new things at her own pace.
We celebrated weekly birthdays then monthly ones. We celebrated holidays and special days. We knew that with Julia, every day was a gift. We loved her fiercely and knew with each passing day that we would do whatever we could to continue to help her thrive. We consulted cardiology again and sought a second opinion at a more trisomy friendly hospital. Both were in agreement that she was not a candidate for cardiac surgery for two reasons: 1) the HLHS surgeries had never been performed in a baby with t18 and 2) Julia already had significant pulmonary hypertension. We were so sad that more could not be done for Julia. We continued to cherish her every single day. She was adored by her siblings. She went to the beach and dressed up for Halloween and flew in a plane and watched her brother play soccer. We were blessed to be able to do so many normal things with Julia.
Julia’s first birthday was such an unexpected gift. We celebrated three different times, with the last being a big party with 75 of her greatest admirers. We were so happy and proud of Julia! She and we were surrounded by friends and family who went to great lengths to support us and love Julia.
Two weeks and 2 days after her first birthday, Julia suffered cardiac arrest. Her heart was thrown into an unsustainable rhythm and the paramedics and ER staff could not revive her. We lost our sweet angel that day. We miss her so much but are so very thankful for the 382 days she gave us. She taught us so much and inspired us even more. Our family is grateful to have had the privilege to know, love, and care for Julia. Every day was a gift.
To read more about Julia’s story, please visit https://jennychildress.