In the spring of 2013 we found out that we were expecting our fourth child. We were ecstatic and announced the news to our other kids, ages 7, 5 and 2, after dinner one evening. A couple of months later we made it Facebook official, telling everyone that a new “turkey” would be joining us sometime around Thanksgiving. The baby grew, I grew, and our excitement grew over the next few months. At our 20 week ultrasound, however, we received some devastating news. Our baby had a Congenital Diaphragmatic Hernia (CDH). Although a very serious condition, our baby’s CDH seemed hopeful if she had surgery soon after birth. We were told there was a very slim chance that this was related to some kind of chromosomal abnormality, which could be determined by a simple blood test. We did the blood test but would not receive the results for 10-14 days.

I called to follow up, having not heard anything for a few weeks. When the doctor called me back her words shook me to the core. Our baby had a condition called Trisomy 13 which was “incompatible with life“.  I called my husband and my mom. I told the kids. I cried. I cried a lot. I called the doctor back because we decided that this time we would find out the gender of the baby so that we could get to know him or her as much as possible with the time that we had. The doctor said we were having a girl, and we named her Teresa Calcutta after Mother Theresa. We began praying for a miracle for our sweet little “Tess.”

We went through a multitude of testing to see what symptoms Tess was showing. Although symptomatically she was doing surprisingly well, termination of the pregnancy was suggested by multiple doctors. Our situation felt hopeless but we had so much support, enabling us to hold on to hope. As my belly and our sweet Tess grew more and more, people who did not know our situation would ask me the usual questions about my pregnancy, such as when I was due, or was I having a boy or girl. It was difficult to hold back tears. When people would see me pregnant with three other kids in tow and comment to me that I had my hands full, I couldn’t help but think “I sure hope I do soon.”

Nine months and 13 days later I was induced. As her heart rate began to drop we had to do an emergency C-section. It went incredibly quickly, and immediately after birth she was hooked up to a breathing machine because her lungs were very underdeveloped. My brother who is a Catholic priest was there to baptize her, while I was stitched up in the room next door. Struggling to manage my pain medication they eventually sedated me. Had I known that we would lose her just nine hours later, I think I would have just dealt with the pain. But I do have a foggy recollection of being wheeled up to the NICU to see her, and of holding her during her last few moments on this earth. The ministry “Now I Lay Me Down to Sleep” came and took pictures of her before she passed away. Her grandparents got to meet her as well as some of her aunts and uncles. My brother celebrated Mass in my hospital room while my husband spent most of that time by Tess’ side.

Believe it or not, death can be truly beautiful. As much as we would have liked to control the outcome, we could not. I could not make her healthy, but I could do everything in my power to give her life for as long as possible. And we were also very fortunate to be able to give her a beautiful funeral service. We had friends who donated her funeral cards. We had friends who gave us a beautiful dress for her to be buried in. St. Joseph’s Abbey makes coffins for free for infants and children, and my mom even took my other children to the Abbey to decorate it with gem stickers. So many friends came to her funeral to celebrate her brief but beautiful life. I have two boxes full of cards and momentos that people sent us. So many meals were delivered that I didn’t cook dinner for three months. To say we had a tremendous community of support would be a incredible understatement. And I am so grateful to our family, friends and the grace of God that carried us through.

I am also so grateful for the nine months and 13 days that I was privileged to carry Tess. Even though her diagnosis was incompatible with long life, it did not keep her from having a full life. She was very fully loved every second we had her. From my kids singing to her in my belly, to relishing every time I could feel her kicks, to telling her daily how much we loved her.

The following St. Patrick’s Day my oldest had to do a project where she decorated a shamrock with things that made her feel lucky. Included on the Shamrock was a picture of our sweet Tess. What a beautiful perspective my 7 year old had, to know that Tess was a gift to our family and that we truly were lucky to have had her. All of our kids – including the two daughters we had after Tess – enjoy celebrating her life every year on her birthday, complete with cake and ice cream. I am forever grateful, and even lucky, to have been her mom.

– Lynne