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Alice Ruth

Created by Natasha Conklin

Alice Ruth

Meet Alice! Alice loves eating, dancing, travelling, being in water, snow, school, learning, trees, books & being with her family. Alice loves a nice breeze, chasing her siblings or friends around. Alice loves running down hills. She loves to walk, but, as with everything she loves, Alice needs assistance. In the world of Full Trisomy 18, Alice has beaten the odds. Over & over, year after year, she beats the odds. We know that we are a lucky family, gearing to celebrate Alice's 7th birthday in a couple of weeks. We continue to desperately hope for many more joyful years with Alice. Everyday is a well appreciated gift, because about tomorrow, who knows?

My husband & I had been married for 2 years, when we were expecting our first baby. Our families were estatic & anxious for this much anticipated child. It was at my 37 week check up, that the obstetrician confirmed what I had been suspecting for months; the baby is small for gestational age. I ate well, I exercised, slept well, read all I can about pregnancy, saw my doctors on time etc. But somehow, the small size of the baby was not caught at previous appointments. Perhaps a blessing in disguise. I knew something wasn't right, but the doctors dismissed my hunches as first time mommy jitters. Alice was born by C-section due to a decelerating heart rate. While laying in the OR with my husband by my side, I hear the words, "low birth weight" & "galloping heart rate". She was going to be admitted into the NICU for observation.

It was about 12 hours later that we heard the term Full Trisomy 18. It was with regret that we were informed that they didn't expect Alice to be one of the 10% of Trisomy 18 babies that reach age 1. In fact, our neonatologist said we'd be lucky if Alice lived for a full week. She was extremely frail, under 4 pounds in weight, with a complex heart condition called Tetralogy of Fallot, that would require surgery. There was nothing they could do for us. They were ready to discharge her after 48 hours. It was terrifying for us as parents. What a blow to take & handle. So we decided that if this child only has a few hours or days to live, we will make sure that they are awesome! We did not cry or mourn around her. We approached her with the joy & enthusiasm of the much welcomed new born we wanted. We showered her with smiles & cuddles galore. She spent a lot of time in kangaroo care, & I talked to her for hours & hours. I told her about her family & grandparents, & where we live, the name of our planet Earth, the stars & galaxies. I talked & talked, & laughed & smiled, & had so much joy & fun with my baby. But, when I got a chance, I went to another room, & I  cried & sobbed for the impending loss of such joy. Living side by side with grief & joy is a unique place to be. The rollercoaster of emotions makes for a rough ride, but makes life as real as it gets. Keeping it all in perspective, & having a listening ear helped my husband & I to cope.

We lived like this one day at a time. We celebrated her birthday weekly, then monthly, biannually & now annually. The rollercoaster is still there, but it is a lot slower moving, & the ups last longer, but the downs seem darker.
Alice has endured more than most us ever will at the hands of medical professionals. She endured open heart surgery just before she turned 1 year old. She endured chemotherapy & liver surgery for Hepatoblastoma that was diagnosed only days after open heart surgery. She's endured a nasty blood infection between chemo treatments. She's endured a nasty C. Diff infection. She endures hypotonia in her upper body that limits her mobility & independence. She's endured spinal surgery for rods to correct for scoliosis, & now she breaths a lot easier. She endures....

Despite these challenges, Alice is joyful, loving, funny, calm, & has a very pleasant disposition. I don't know how she does it, but she is my hero. And so we endure.

We wish we knew what set Alice & other "long-term" survivors of Full Trisomy 18 apart. I would very much love to share that secret, so that other parents don't lose their babies too soon. Every donation made, goes to this very worthy cause. Trisomy 18 research will work to find out how to lessen the daily medical challenges that Trisomy 18 children like Alice face, improve their quality of life, and guarantee a better future for them.

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