Trisomy 13 - Dignity and Grace in Life and Death
On September 14, 2001 Andrew and I found out we were expecting our 3rd baby. We had done this twice before and I was not that concerned or anxious to get to the Dr. right away. We were very excited even though we had not actually "tried" to conceive. We had also decided we would keep it a secret as long as possible! :) Love to keep a good secret! On October 31st we had our first ultrasound and discovered that our baby had markers for a chromosomal disorder as well as tachycardia. Devastated at hearing this we shed lots of tears and I experienced a lot of worry, anger, and fear at what lied ahead of us. I prayed many times that if the Lord was going to give us a baby that would not live that He would just go ahead and take it from us right then. On November 23rd, I began spotting and cramping but since it was Thanksgiving weekend we waited til the following Monday to go to the Dr. where we found out that there was no heart beat and our baby was resting safely in the arms of Jesus. We were very saddened but also very thankful to God that he spared us any further pain and sorrow. It was not until Christmas Eve Decemeber 24th, 2001 that we found out that our baby was a boy :) and that he had Trisomy 13. I wanted to share this video that I came across on another blog. If you choose to watch the video, have your tissue box handy and be prepared to cry. We look forward to meeting our little boy in heaven one day and have peace knowing that he is in a better place in a "perfect" body.
Our Baby (October 31,2001)
This is a photo of me at 6 weeks pregnant and our pregnancy test.
I was so moved and touched by this wonderful couple and their capacity for unconditional love. It was also a gift of love that they celebrated the life of their baby - no matter how brief and no matter how tinged with sadness - and that they chose to share their story with others who could benefit from their example.
This is something you might want to share with your older children. In a world where we are taught that we are entitled to have perfect, unblemished lives, we need to know how to walk through these things ourselves with dignity and grace. ~Barbara Curtis
Our Baby (October 31,2001)
This is a photo of me at 6 weeks pregnant and our pregnancy test.
I was so moved and touched by this wonderful couple and their capacity for unconditional love. It was also a gift of love that they celebrated the life of their baby - no matter how brief and no matter how tinged with sadness - and that they chose to share their story with others who could benefit from their example.
This is something you might want to share with your older children. In a world where we are taught that we are entitled to have perfect, unblemished lives, we need to know how to walk through these things ourselves with dignity and grace. ~Barbara Curtis
Comments
Mom to our sweet Natalia who is now 9 yrs old, living with trisomy 13.
You can meet many families with children still living and also those like Thomas' family who carried to term to meet their beautiful children. Over 250 family stories and amazing children so very loved.
Living with Trisomy 13
http://www.livingwithtrisomy13.org
ThereseAnn, mom to Natalia
People need to know that there are long-term survivors of trisomy 13 in all of its forms (Full, Partial Translocation, Mosaic, and Ring). The website mentioned by ThereseAnn is filled with the stories of long-term survivors and also has a Treasured Memories album honoring those children and adults who had Trisomy 13 and have already gone to be with the LORD. There is a Prenatal Album, as well, for those families expecting a child diagnosed with Trisomy 13. The messageboards on the site provide wonderful support for the families.
If the first thing encountered by families of unborn, or newborn, babies with Trisomy 13 were not pressure to abort, or pressure to withhold treatment, even in cases in which ultrasound or post-birth observation and testing indicate a strong child without the severest anomalies, we would, no doubt, have more survivors and thrivers!
My sincerest apologies for sounding, unintentionally, a little too strident with the last part of my comment. I appreciate your sharing the video and the heart for your family and the LORD which are so apparent on your blog! Interestingly, though, I contacted the writer (a woman named Lee at the Dallas Morning News) responsible for the "Choosing Thomas" story. I asked that she consider doing a follow-up story showing that, not only could a choice be made to carry to term, but that some of the children live much longer, particularly when highly treatable conditions were operated on, medicated, etc. She did not seem very open to the idea. I know that God's plan for some of these precious babies is to go straight from Mom and Dad's arms (or even from Mom's womb) to their Heavenly home, but I ache for those who are denied life-saving treatment based solely upon the T-13 diagnosis.