Tuesday, April 24, 2012

Trisomy 18

A week after my amnio we got the results that our little one has trisomy 18. It is a chromosome abnormality where he has three copies of his 18th chromosome instead of the regular 2. It is in relation to trisomy 21 (down syndrome) but it is much much worse. In our case it is a problem because with this condition they will not do any surgeries on our sweetheart and without surgeries he will not be able to live. I have kind of put off writing this post because I really don't know what to say. Is it the toughest thing I will ever have to deal with, Yes. Do I have any idea how I am going to do it, No. As long as I constantly focus on the eternal perspective I am ok. I know that we come to this earth for two reasons, 1. To gain a physical body, which he will receive even if it is for a short period of time, and 2. To be tested; I know that he has no need to be tested, I know that it was not necessary, I know he is as pure as they can get. I found a quote that literally gets me through every second of every day. It says-“The Lord takes many away, even in infancy, that they may escape the envy of man, and the sorrows and evils of this present world; they were too pure, too lovely, to live on earth.”- Joseph Smith. I am grateful for all of my many blessings, I am so grateful for Presley, she gets me through every day, I don't think I would get out of bed if it wasn't for her, I am so grateful for Mine and Jason's temple marriage, I could not be more thankful for the opportunity we have to be an eternal family unit, to be sealed to this little one forever. I am thankful for all the prayers and thoughts of all our friends and family, I know it seems like they may have been unheard or unanswered but that could not be more incorrect, they are the only thing that keeps me going and at this point this baby is truly a miracle, 90% of all trisomy 18 babies end in miscarriage or stillbirth and he has made it this far, so we are very grateful for that. I go back to the doctor in 2 weeks, I will go every 4 weeks and they take it 4 weeks at a time.. He seems to think that the baby will make it to actual birth but they can't guarantee anything. So my next appointment they will look at his heart to see how bad the defects are and then they will take it from there. Thank you everyone for all of your love and concern we appreciate it more than you will ever know.


  1. I almost didn't comment because I'm not sure what to say except that I am SO sorry you are going through this... And that doesn't seem to cover it. You will be in my prayers. Xo

  2. My heart has just shattered in to pieces. It is so hard to know what to say and people think that there is nothing that they can say to make you feel better but having gone through our experience just hearing from people helps. Somthing they say may seem so small to them and as the recipient it just might be huge. The Joseph Smith quote you wrote is also one of my favorites and helped in bringing me peace, I loved the book "Gone to Soon" its a church book that gave me allot of comfort there is a quote in there I think it is also J.S. that says mothers will have the oppertunitie to raise our children in the after life, I so look forward to that day! I would love to send you a copy of that book if you do not already have one message me your address. What you are going through is so different than what we did but we found so much strength through the Lord I know yours and Jasons Testimonies are strong and will get you through I love you guys and cherish the time we got to know you. You are in my thoughts and prayers. If I can help you in any way please let me know.

    1. Maclee, you are the greatest, you have no idea how much I have thought of you since we have been going through this. Although the situations are a little different, just knowing that you made it through and are still so strong has given me so much strength. Thank you for your sweet words and kindness I appreciate it more than you'll ever know. Thank you for letting me know about the book, I've been needing to get some. Our address is PO BOX 1004, logandale 89021. Thank you so much for all you guys have done for us, you guys are the best!

  3. I just wanted to leave a comment and say that you and your family are in my thoughts and prayers. I've been down the road you are on, and I know how hard it is. I'm happy to say that I have a little girl with Trisomy 18. Her name is Lily, and she turned three on Monday! And I know many more children with Trisomy 18 who are even older! There is hope! I don't know if you've reached out to anyone, but there are a few Facebook groups that you might find very supportive. If you'd like to find out more about them or if you have questions or you'd just like to "talk," please feel free to email me at southerngirl72j@comcast.net. If you'd like to learn more about Lily and see how Trisomy 18 affects her life, which is NOT incompatible with life!, you can "meet" her at www.iseeloveblog.blogspot.com. I wish your family the best.