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Stories of Lost Children

Matilyn Grace
by S.LT., Quakertown, PA, USA

Matilyn Grace was born July 10, 2008. The first 6 1/2 weeks of her life were great because she was at home with us. At her cardiologist appointment on August 23rd, the doctor told us that she needed to be admitted to CHOP until she lost some fluid off her lungs and gained some weight. He told us we would be there the most 2-3 days. Later that week, I was told that she needed her first heart surgery that week. Matilyn went through her first heart surgery and the next morning we were told that she needed to have another surgery that afternoon. She came through the second surgery with flying colors, or so we thought. After about a week of being in the ICU, we were moved to the CCU for the rest of her recovery. The day before we were to go home, Matti asperated and could not breath and was rushed back to ICU. She had to get a breathing tube put in and we later found out that she tore her stitches out from her heart surgery. I spent every day by my little girl's bedside seeing her go through hard times, but she just kept pushing on and fighting.

About a month later, she needed her third open heart surgery. The doctors repaired her valve instead of replacing it. A week later she needed her fourth surgery to have the valve replaced. She came out of the surgery needing her chest left open and on a heart and lung bypass machine. We were told that she needed to come off that machine within a week to be okay, without any brain problems. We had to talk to the heart transplant team, but were told that her heart was working well enough that she wouldn't need a transplant. Matilyn was taken off the bypass machine and was improving. She got an infection in her bloodstream. That went away after a few days, but ended up coming back the next week. The doctors took us in a conference room to tell us that Matti was not going to make it past the weekend. My whole family came to support us. Every little feat Matilyn overcame that weekend, we celebrated.

Monday morning her doctor came into the room to tell me she was not improving and she was going to turn her ventilator off and all her medications after my mother came. It was as though Matilyn waited for my mom to come before she left us. I was holding her in my arms when she passed away and her father was holding her little hand.

Even though Matilyn Grace was only here with us for four months, they were the best four months of my life.


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