Support Baby Sylar's Journey with T-18

Story

Hello family and friends As many of you know, we are expecting a baby after 7 years of trying. We want to announce this news so that we may ask for support, help, and most importantly, sympathy. What started out as a beautiful new chapter in our lives has now drastically become a long nightmare. Our journey quickly became heartbreaking and tragic. It hasn’t been easy for both of us, and due to everything that has been happening, Angela has become high risk and unfortunately could no longer do her job to keep this baby safe. We have had MANY appointments to get all the answers we could possibly get to try to fix this and many more to come. But our baby boy Sylar has been diagnosed with T-18 (Edward syndrome). We have been through many different blood tests and ultrasounds, and our little boy is showing significant signs of T-18. T-18 is a genetic condition that causes physical growth delays during fetal development. The life expectancy for children diagnosed with T-18 is short due to life-threatening complications. Babies born with Down syndrome (T-21) have complications as well but are more often to survive and live life much longer than the babies with T-18. We want to share this so we can also limit having to travel down this painful road. We know all of you have been excited for us, and we are very grateful to have such a caring and loving support group! Here’s what has happened with testing and results: We got blood work done twice between my 18-21 week mark to really look into T-18 due to first tests can have “false positives.” When our OB showed us the results, the second came back with a high positive after I was a bit longer into my pregnancy. This is when I have become high risk and immediately been transferred to a high-risk doctor. We are scheduled to meet with a neonatologist next week along with an ultrasound and an MRI. We have had NIPT testing done, EKG, several ultrasounds, and an echocardiogram to look at his heart. We have several other appointments that have been scheduled. Our baby is measuring on the preemie side (which is very common for T-18). He has 3 very uncommon/rare heart problems with his right side being a little smaller (which is his red-rich oxygenation blood that goes throughout his body). He has 2 open valves in his heart which is making/mixing his blood, and the two main vessels that send blood to the lungs and body are fused together. They can indeed be fixed with many surgeries. But with him being diagnosed with T-18, 99% of cardiologists won’t do the surgery because he has T-18, and it’s something babies don’t survive very long once they are out of the womb. Surgery won’t help him much; it will only increase losing him faster, even possibly putting him through suffering. Because T-18 is also very common to affect the heart, but also the brain, and fail to tell the lungs to breathe. As well as the possible chances of miscarrying him during my pregnancy. Which is why I had to resign from my job and have been doing everything in my power to carry him as long as I can so we can get him close to full term. Kurt and I have been mentally preparing ourselves, and our high-risk team has been working with us and helping us have precious time with our boy once he’s here. Doing everything in their power to keep him peaceful and healthy without suffering and pain. Once our boy is born, we will only have days, weeks, maybe even months to create wonderful memories with him. (Every case is different on how long life is expected and is never really known.) He will be moved straight on support to help keep him comfortable and be kept in the NICU. The team knows we don’t want any sort of suffering for him, and they have helped us make our birth plan. They fully understand and are going to be by our side every single step of the way from here on out. There is ABSOLUTELY nothing we could have done differently to not have this happen to us. This is sadly the baby’s fate the moment it is conceived and I wish this never existed and no mother and father has to go through this pain. Our boy is not going through any sort of struggle while I am carrying him. He is happy and moving around so much! My body is supporting him and keeping him strong and fighting another day closer to full term. All that we ask from all of you is only love and support as we go through this extremely difficult time. If you can help in any way financially, it would be greatly appreciated as our insurance is only covering so much and the bills are already racking up. We are doing everything we can to make sure he is going to be comfortable and are going to do everything we can to get as much time with him as possible. We love you all.❤️ Thank you.