Taryn Lynnaya

My beautiful baby girl! I went through this journey, I have experience in every emotion you can think of and more that you never knew existed. I was 16 weeks gestation when I went in to have the Anatomy Ultrasound performed, all was going as it should and then the ultrasound tech stated that she needed to see if the Radiologist needed any more pictures or if what she had was ok. When she returned, the Radiologist and my OB entered as well, and then I knew there was something wrong. The ultrasound tech performed more of the scan while my 2 Drs conferred together and whispered between each other. I will never forget the Radiologist saying to the OB, I’ve never seen anything like this before. (Just a side note here, I wasn’t only a patient of theirs, I was a colleague; I had worked in the OB office prior and then was working under the Radiologist in the reception office. I believe it made it harder on them to have to tell me the things that were to come. One of my family members was the transcriptionist for our Radiologist as well. It’s so hard to take the personal side out of the emotions sometimes, but they were a big part of my moving forward too.) We were told there were some abnormalities on the scan and would go over them during my next OB appointment. We found out that the umbilical cord was a 2 vessel cord instead of a 3 vessel cord and we found out that we were having a girl. My only baby girl, I do also have boys. At the next appointment we were told she had a brain malformation- Holoprosencephaly. Which means that the brain did not split into 2 halves as it should have. A white spot on her heart- Echogenic Focus, possible cleft lip/palate and the blood tests from the lab showed abnormalities, but not Trisomy 21 or Trisomy 18 and could possibly still be Trisomy 18 but most likely Trisomy 13. As we lived in a small town in Utah, we were referred to Salt Lake City Utah to the University of Utah Hospital Maternal Fetal Medicine wing. Once we went there, we received another ultrasound, met with Geneticists, and underwent some genetic testing. We were referred to Primary Children’s Hospital to have a Fetal Echocardiogram performed and an MRI of the brain was scheduled as well. I was contacted by an organization that is with Intermountain Healthcare known as Angel Watch. Tests came back confirming Trisomy 13, the Echo showed a Ventricle Septal Defect (VSD) which can be surgically fixed once the child is old enough. I canceled the MRI because in my mind, the brain was already formed to how it was and there would be no surgical fix for that. I started my research, I found the SOFT organization (Support Organization For Trisomy) I found them through a web search and then also found their Social Media. A whole new world opened up to me. I was able to connect to others, that knew exactly what I was experiencing. I was able to find out that a Dr at Primary Children’s Hospital was a founding member of SOFT, as well as my MFMOB being apart of it. I met with Dr Carey and had a very lengthy conversation about Trisomy and also his experience. I was in my 30-somethingth week of gestation at that point and he said, the fact that I was as far along as I was, and she was still alive was amazing. You see.. somewhere during all the doom and gloom that the world was trying to tell me about, I started STATING-DECLARING when talking about my baby girl that … this is what the DRs say… BUT this is what I say- My baby will be born alive, I don’t know how much time I will have, but she will be born alive. We decided to induce at 37/38 weeks as one of my sons lived away from us and he was going to be home for Spring Break and I wanted him to meet her. The last ultrasound that they did was 2 days before the induction, on that scan they found that she hadn’t grown more since the scan before and inducing would be the best to have time with her. The scan also estimated her to be 3lbs 14 oz, so we were expecting a tiny little girl. My mom and I went shopping and found what we could in preemie sized clothing. I was induced on March 23. Like my others, it took all day and into the early night. She was born at 10:24pm ALL 5lbs 1oz and 19” long. (those preemie clothes, did not fit her!) At first she was not breathing, they placed her under room oxygen ( I think that is how it was explained) We chose no medical interventions. Soon she started breathing on her own and her color went from gray/ashy to perfectly pink. She had the most beautiful shade of Auburn hair that I have ever seen, that was a natural color! And she had a lot of it! My daughter had 6 fingers and 6 toes on each hand/foot. She had rocker bottom feet, she had a cleft lip and palate as well as her nose was not formed properly. Her eyes were bulgy. She did have a feeding tube placed and I was shown how to re-place it incase she pulled it out. She was born on a Wednesday night, we left the hospital on Friday evening and drove back to our home Saturday afternoon. We were set up with a Home Health Team and a fabulous Pediatrician that would come to our home. On the 17th day of life, she developed a disconnect between her brain and her body ( when the brain tells the body to do something, but the body doesn’t respond) and she had many episodes of not breathing. Her Dr came over and administered some meds to help keep her comfortable. April 9th 430pm my baby girl passed away in my arms surrounded by so much love. Yes, my Trisomy child passed away. There are so many others that are living and thriving and being all the JOY that follows them. My sweet girl knew nothing of this world except for LOVE and in most abundance! I could have had medical interventions, but in my decisions I felt that it would be for my own selfish reasons and I didn’t want her to live that life. I do not look at anyone else and think that of them, what they and you do for your child/ren is for you to decide. I have the most beautiful Auburn haired girl waiting for me, she is with my King Jesus and one day I will be too. 9 months and 17 glorious days, changed my life forever. The alternative is, to never have gone through it, and that would mean that I would never have known what pure joyful love is, I would have never held it in my arms… and oh how beautiful it is!