2013-03-07 14:59:08 by Christy Hoffman - Patient Family, as posted on the inside.akronchildrens.org blog.
Hello! So, I've been meaning to write this for the last four years, but in all honesty, time has gotten away from me. I figured better late than never. My only request is that you please pass this on to the nurses in the NICU, even if they don't remember my story or my daughter, I only hope that it brightens their day.
Our story started on January 17, 2008, when our second born and first daughter was born at Wooster Community Hospital at 31-weeks gestation. Her name was Avery Lucille Hoffman. When Avery was born, she was very sick and was immediately transported to Akron Children's NICU to be looked at because her illness was beyond what Wooster could do. Quite frankly, they hadn't really seen case like hers before. Her time on earth was short - she was only alive 7 hours - but her impact on our lives and the knowledge that was gained from her case will never allow her to be forgotten.
Avery had a very rare form of a skeletal dysplasia that had not been seen before. But Dr. Haynes Robinson sent her tissue out to UCLA and the National Registry for Skeletal Dysplasias. Ultimately, Dr. Deborah Krakow (associate professor of orthopaedic surgery at UCLA) started investigating Avery's case as she thought she had seen a case similar to hers before. While we found out fairly quickly that we had a less than 1 percent chance of her syndrome ever reoccurring, we just found out (on what would have been her fourth birthday this year) that the study that Dr. Krakow had started was being published. You see, because our beautiful daughter was born, they were able to pinpoint the gene mutation that causes the syndrome. It was published in a medical journal.
What an amazing feeling we were overcome with to know that maybe, just maybe, another family could have some closure as to know why their child had died … all because our little Avery survived long enough in the womb.
Why am I writing do you ask? Well, after Avery passed away, your staff and nurses went BEYOND the call of duty for our family. Maybe it's standard protocol - I don't know. But to have a nurse personally deliver the hand and foot print of our little angel, and pictures that were taken while she was there, was the most special and thoughtful gesture. For one, I had no idea I would receive something as precious as this, but to have someone personally bring it to me was even more special. All the cards sent to my house long after our daughter had passed just showed us how invested your staff is in the families that come to your hospital.
Dane and Delaney
While I did send cards to say THANK YOU previously, there was one thing that the nurse who delivered those footprints said to me that stuck. I asked her, "How do you do it? How do you see so many sick babies and not go home depressed every day?" She replied, "Well, do me a favor. When you have your next healthy baby, please send us a picture, because that really makes our day." Well, while I can't remember the name of that particular nurse, her words have always stayed with me and I'm FINALLY getting around to sending not ONE, not TWO, but THREE pictures of the children we have had since the loss of our Avery.
Thank you so very much for reading our story and please give all of the nurses a big hug from the Hoffman family in Wooster, Ohio. I admire every single one of you for the work you do. I have included some pictures of our children including Avery. Grant (7, was born before Avery but I couldn't leave him out), Dane (3), Delaney (2) and Beau (4 months).
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