“I’ve had to learn how to talk to doctors and fight for her.”
Trinity Smith, Dorris, CA, USA, 11/16/2012 – 2/26/2013
From the second Trinity was diagnosed prenataly, all I heard was “incompatible with life” “terminate” and “no quality of life.” Although everything I was being told was terrifying, terminating was never even a consideration for me. Even when pushed to terminate, and believe me I was pushed to terminate, I’d repeat to them over and over that if she was going to die, it wouldn’t be by my hands. After researching and talking to other moms online, I knew that she’d most likely need to be delivered by c-section, so I began that fight. After switching a few doctors and much argument, I convinced them they would do the c-section if necessary. I’m extremely thankful I never consented to an amnio to confirm her Trisomy 18, or I don’t think they would have ever agreed to it. As it turned out, her heart couldn’t handle even the smallest of contractions and she arrived November 16, 2012 by c-section. She was doing amazingly well. She was in the NICU for feeding issues, but that was really the only current problem. At 2 weeks old, her heart began to cause her issues. She had a VSD/PDA/PFO that needed repaired. It took a lot of arguing and fighting, but finally I got them to agree to do her heart surgery. Her airway was to small, so in order to do the surgery, they would have to do a tracheostomy. I consented and her heart surgery was done and was succsessful. However, she was put into heart block and a week later she had to undergo another surgery to insert a pace maker. a few weeks after that she has to have her diaphragm repaired as it was also damaged during surgery and she had a feeding tube placed as well. It has been a constant fight with doctors to make sure Trinity is getting the care she needs. I had to learn how to talk to doctors and fight for her. It’s a constant balance of figuring out just how much logic, facts, anger, and emotions to use to be able to be heard. It’s exhausting as many other parents in my place already know, but it’s a fight worth fighting. Trinity is an amazing little girl. She’s fiesty, sweet, and happy. I couldn’t imagine life without her, but unfortunately that is what I’m learning how to deal with today. On February 26, 2013 Trinity took her last breath.
It could have been different, I truly believe that if doctors would have treated her as a human being, if they would have done her heat surgery at 2 weeks old when she needed it instead of 4 weeks old, she’d be here in my arms today. Some may say this diagnosis is incompatible with life, but it’s doctors who don’t treat these amazing children that insure that. If they would just open their eyes, they would see many amazing children that have just began to make their mark on this world.