“…because these kinds of children are “COMPATIBLE WITH LIFE” and they do deserve a chance…”
Eliana Harris, Trisomy 13, 02/17/2015 to 03/15/2015, Franklin, KY
Up until earlier this year I did not even know what Trisomy 13 was. However my daughter Eliana Patricia Harris, Princess Eliana, or my ma called her Thumbalina had Trisomy 13. She was born on February 17, 2015 at 7:34 p.m. she was 4lbs 12oz and was 16 inches long. I had to get an emergency c-section because when I went for my check up her rate was fluctuating up and down so they sent me to the hospital where later that day I was able to have her. When she first came out she had the squeakest cry and was also born with polyatcly which was an extra finger on each of her hands. the doctors stated that it was normal a lot of children are born like that so I spent time with her not knowing anything was wrong and allowed the nursery to take her. I woke up a few hours later because they said I can have her back at any time as I was waiting for the nurse to come back in an hour passed the doctor came in an finally told me that she had been having some breathing issues and had to be reminded to breath and that they were going to life flight her to the NICU downtown. I was extremely scared and demanded to see her. Then they finally let me go in the nursery and hold her until the helicopter showed up. My family stayed with her that night and the next day I left the hospital to go be with her. Her doctor said he thought she had Trisomy 13 because of all of the symptoms and that they were running a test to confirm it but that if she did that she was “incompatible with life”, and to “enjoy my time with her” because they usually don’t live longer then a few hours or days and she probably would not live longer then a month. My daughter fought extremely hard, luckily she did not have any organ defects or facial defects but she did have brain stem apnea as well as the polytacly and she passed her eeg test showing she did not show any signs of seizures. After a week of being in the NICU and having some doctors that really stopped helping because of her diagnosis, I was able to take her home with a pulse ox and a heart rate monitor with her oxygen and feeding tube. I learned how to take care of her and was willing to do what it takes to keep her alive but it was like fighting a losing battle because they were not so willing to help. We were home for a week with horrible care from Hospice and then spent the last five days of her life in a Hospice facility with a 24/7 nurse who was not allowed to help me keep her alive by doing anything heroic so I had to keep her alive for the last two days of her life by blowing into her mouth to help her breath and continue to remind her to breath. I continued to ask the doctors to do a tracheotomy but they said they would not do that because she would never make it through the surgery and if I was to take her back to the hospital they were not going to help much with her breathing because it would just be prolonging the inevitable. My daughter passed away on March 15, 2015. I feel like a part of me has died with her that day but I would like to keep her memory alive by raising awareness and by hopefully one day be able to change certain states laws because these kinds of children are “COMPATIBLE WITH LIFE” and they do deserve a chance – they are human and I want to continue to honor her and allow her memory to live on by helping fetus’s, newborns, and children like her by doing more research and giving them a chance at life. Thank you all I hope this post helps and starts to raise more awareness and we can start giving to more funds to get this rare chromosome known better throughout the world. R.I.P Princess Eliana Patricia Harris….Mommy loves you babygirl/my guardian angel!