Quinten's Story Will Forever Be Part of the NICU at Children's Hospital

About a month ago, I was contacted by a mom who is putting together a Memorial Wall in the NICU of Children's Hospital, in memory of one of her twin daughters. She wanted to include Quinten's story! You can imagine that I was thrilled to share our story, and have him forever a part of the NICU. I explained to her that although we only spent 7 days in the NICU, Quinten's "story" began long before that and really the NICU was just a small part of what we went through. Before I had a chance to tell her Quinten's story, I wanted to ask her about her daughter who sadly passed away. As she retold her story of her identical twin daughter who passed away at 26 weeks - I got goose-bumps. She spoke my language so clearly. At 12 weeks at her first ultrasound, she was not only told that she was having twins (and she was elated), the news immediately followed with concerns with one of the twins. She had a large cystic hygroma that went from her forehead to her tailbone. I couldn't believe my ears. Her family did a lot of praying, hoping to beat the odds of the hygroma. Over the course of the remaining pregnancy her little girl's hygroma continued to grow, and she eventually developed hydrops. At 26 weeks, the twin passed away in utero and because they were identical and shared the same placenta, they had to take the other twin immediately because she kept pumping blood to the other twin but wasn't getting any oxygenated blood returned back to her. Luckily, her other twin daughter survived. Although small (2.6pounds) - the twin with the hygroma weighed 6.6 pounds because of 4 pounds of extra fluid! Her story gripped my soul, and again I feel that she like many other people I've met, were brought to me for a reason. I realized once again just how lucky we were to have Quinten in our lives - its a good reminder every once in a while, to not take things in life for granted. He did beat the odds!!

As part of this NICU memorial process - Quinten got to get a professional photo taken of him that will accompany his story. Below is the photo that was chosen of him:) Love his smile and how he smiles with his whole body, and squinty eyes!!

Quinten’s Story

In June 2011, at 12 weeks gestation, we were told that our little boy had less than a 5% chance of survival. During a routine ultrasound, a large cystic hygroma was detected on his tiny body that started at his forehead and extended to the middle of his back. We opted for an amniocentesis to get more medical information and to determine if he had chromosomal abnormalities that may have caused the hygroma. We were told that he had Down syndrome and that he may not survive to birth. The hygroma did not continue to grow, and by 26 weeks it had completely resolved and he appeared healthy otherwise.

I carried Quinten to full-term, and on November 30, 2011, he was born. The Down syndrome diagnosis really didn’t scare my husband or I, mostly we were just concerned for his heart and other potential health issues that babies with Ds are at higher risk for. We tried to prepare ourselves for a NICU stay, perfectly aware of the potential issues that may arise after he was born. But we hoped for the best. Almost immediately after Quinten was born he began having trouble with his breathing and sustaining his oxygen saturation levels (Pulse Ox). After spending three days in the nursery at OSF St. Joseph’s, he was transported by ambulance to Children’s Hospital. Handing my 3-day old son over to the ambulance medical team was the hardest thing I ever had to do. He was placed in an isolette for transport and provided oxygen for the ride over to Peoria. The ride over to Peoria was the longest 45 minutes of my life, not knowing if he made the trip okay or not. We were relieved to get the phone call that said he made the trip just fine.

He spent 10 days in the hospital (3 days at OSF Bloomington, and 7 days in the NICU) after his birth. Those days in the NICU were such a blessing to him and to us. The extensive Pediatric Specialist consults and care were so welcoming to us. Because of his Ds, he was going to need a lot of medical consultations after birth and we were able to have all of his evaluations done during his stay at the NICU. The doctors, nurses, and therapists all provided such wonderful care for our son and gave us such peace that we were in the EXACT place that we needed to be for our son. We have the deepest gratitude for all of them, and have them to thank for helping us bring our son home healthy and strong.



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