Owen: 13 Stories of Trisomy 13

Next in our series on 13 Babies with Trisomy 13 is precious Owen.  Sara and I were pregnant with Violet and Owen at the same time. We found each other on a message board for families carrying to term despite a fatal prenatal diagnosis. 

Who do you share your life with?
My name is Sara. I'm mommy to Owen. I am grateful to share my life with my husband Scott, who is so incredibly loving and fun, and is my rock. Our life together has been blessed with our ten-year-old daughter, Abby, who came to us through the gift of adoption. She, as well as Owen, happens to be chromosomally enhanced. She has Trisomy 21, or Down syndrome. Seven-year-old Jack, and five-year-old Ainsley also call me "Mommy." They both came to us the "conventional way."

Can you introduce us to your baby? What would you most want us to know about him?
My baby boy's name is Owen Nathaniel MacGregor. He is the much loved, much wanted, terribly missed fourth child in our family. He was actually a rainbow baby, himself, as I had had a miscarriage before I got pregnant with him.

Can you tell me a bit about how you learned he had Trisomy 13?
When we went for our 20-week ultrasound, the technician seemed to be being extra thorough. We assumed this is because our son had been born with an open sacral dimple (which is a form of spina bifida). We always joke that God will give us a baby with Down syndrome because we had adopted a baby with Down syndrome. And we were okay with that. After we had been sent out to the waiting room to wait for our appointment with the doctor, we started to wonder if that was actually coming true. The wait time between the two appointments seemed to be much longer than usual. When we finally saw the doctor, he said that the tech had seen something in the ultrasound that led her to believe that there was a problem with the development of the baby's brain that could lead to mobility problems. I remember thinking, "Wow, this is going to be really hard, and when the baby is born and everything is okay, we will say, 'That was really hard.'"

Our doctor walked us down a back stairway to the Maternal Fetal Medicine specialist so that we could get a more extensive ultrasound. I saw the specialist come out to the counter area, pick up our file, and sigh. Then I knew things were really not good.

After the ultrasound was over, the specialist came into the room and gave us a list of the conditions our baby had. We didn't know at this point if the baby was a boy or a girl because we like the suprise.

There were problems with the baby's brain, heart, kidneys, eyes, and he or she had a cleft palate. The doctor told us that the baby likely had Trisomy 13 or Trisomy 18 and asked if we were at all familiar with chromosomes. In tears, I said, "Yes. We have an adopted daughter with Down syndrome, and I used to be a special ed teacher."

The Maternal Fetal Medicine specialist asked if we were interested in having an amniocentesis done so that we could determine the exact diagnosis of the baby. At first, we actually declined because we didn't see the point. I envisioned another appointment, in an operating room and knew that getting a formal diagnosis would not change the fact that we were going to continue with the pregnancy.

By this time, my doctor had come down to where we were and was encouraging us to proceed with the amnio. It would take place right then and there, in the same spot as the ultrasound. He said that knowing would help him care for me throughout the rest of the pregnancy.

We decided to go ahead with the amnio. Something that was really great for us is that no one ever suggested that we terminate the pregnancy. It wasn't even offered to us as an option because it was a Catholic hospital.

I remember saying to the doctor, "How long is this going to take?" I just wanted things to be over with as soon as possible. How quickly my mind would change. That night I started researching online. I learned the phrase "carrying to term." I found the CTT board on Baby Center. I found out that I was not alone.

Three days later on a Sunday afternoon, the genetic counselor called with the first round of results from our amnio. Our baby was a boy, and he had Full Trisomy 13. We named him Owen which means "like a warrior."

Our next question was whether or not it was the type of T13 for which our two biological kids could be carriers. My heart was breaking at the thought that they would have to go through this, or at least take into consideration that they might be carriers. The second round of results indicated that it was just a random occurrence.

What was his birth like?

I had had two prior c-sections due to failure to progress, and at the point I was in my pregnancy, I could have likely needed a vertical incision if another c-section was necessary. So, we were determined to do everything possible to have a vbac. I went in to begin the process of softening my cervix the night before induction. This would cause labor to start slowly and gradually due to the c-section scar and risk for rupturing of my uterus.

The following morning we went to the hospital to officially be induced. After I had been there a short time, three of my friends showed up, one by one. I have to say that it was truly a gift from God having them there. One of those blessings in the midst of sorrow. We belly laughed until the contractions finally started to get bad and I physically couldn't take it anymore, several hours later. If anyone would have ever told me that I would have been laughing so insanely hard when I was in labor - with my baby who had already passed away, I would have never believed them. It was one of the greatest gifts, and I honestly can't explain it.

Labor was long and hard, and the epidurals (multiple) didn't work. I had the same problem with not progressing. I remember lying in bed early the following morning when we were approaching 24 hours. I was silently crying in the dark. A nurse came in, saw that I was crying, and said, "What's wrong?"

What's wrong?!! On my gosh! She really could have taken her pick: My baby was dead. I'd been in labor for nearly 24 hours. I was stuck around 3 cm. And the epidural wasn't working.

Fast forward a little, and after 30 hours, our Owen made his entrance.

How far along were you in your pregnancy?

I was 29 weeks along, ironically the same gestational age our daughter Abby (whom we adopted) had been born.

How was your time with him?

Our time with Owen was so much more than I had expected it to be. I was so happy and so proud of him. He was beautiful, so imperfectly perfect. My heart was full.

He had been gone for three days by the time he was born, and his precious little body was not in very good shape. This actually helped me because I felt like, although we were holding his body and loving on his body, Owen was not in there. His soul had been in heaven since the minute his heart stopped beating.

I had so been dreading having to make the decision to part with his body. How would I know when the time was right? What if I just couldn't say the words for the nurse to take his body? What if I said it too soon and would always regret not having enough time with him?

But I felt like it was another gift: that I knew, without a doubt, when it was time to let his body go. It had started to change, and I knew it wasn't Owen that I was holding. Just his body that he didn't need anymore.

What did you choose after his death for memorials?

We decided to bury Owen in the small church cemetery where generations of my family are buried. It's the church where my husband and I were married, the cemetery I'd played in as a child, where I would go to visit my grandparents' grave and end up walking for an hour, just reading the inscriptions on the stones.

It is located a couple hours from where we live. We just couldn't imagine picking a random cemetery in a city where our roots are not yet deep. Just one day before I had started to be concerned that he wasn't moving as much, we met with the cemetery trustee, an elderly family friend. We chose the resting place for our baby boy while he was still very much alive, yet only for less than two days. I found comfort in choosing to have him buried next to my great-uncle Howard, another special little boy with an extra chromosome (his the 21st, like our daughter Abby) gone too soon.

We chose to have a small service, just family and close friends. We called it Owen's Send-off. It was held graveside on the most beautiful fall day. My husband's aunt took pictures that day, mostly candids. At the time, I remember thinking it was odd but harmless. It wasn't long until I realized what a treasure she had given us. She captured little things like my husband's and my arms around each other. Our little boy, who was five, dressed in his little suit, clinging to his mommy and peeking behind. The somber and confused faces of our kids and nephews. The table we had set up with mementos. The little white casket with the blue flowers on top.

Where are you in your grief journey today?

Grieving Owen has been terrible, and it has been beautiful. One thing for sure, it hasn't been a straight line. There have been times farther from losing him that I have been struggling more than I was not that long after.I believe that I will always miss him and think about how old he would be and what he would be doing. There will always be an ache in my heart, but I'm learning to live with that because I also have peace.

What advice would you give to other bereaved parents?
One thing I like to tell a family that might be facing a prenatal diagnosis of a life-limiting condition is to make memories. As devastating as the diagnosis was, and as much time as I spent crying in my bedroom, that's not what comes to mind when I remember my pregnancy. After finding out that Owen had Trisomy 13, he went to a Cubs game (and they even won!) and to Disney World, as well as on a special mommy/son date night with his big brother Jack. Those are some of the memories I treasure of our time with him. It's so nice that we were able to be intentional at such a time, because now our whole family has those times to look back on.

I would also recommend reaching out to other bereaved parents. The friendships and connections that I have made with other moms who have experienced loss have been so helpful in my healing, and it's amazing the different ways our paths have crossed. Having friends who share the ache has been a band aid for my soul.

Some other things that have been comforting to me after losing him have been keeping mementos around our house that affirm the fact that he is a part of our family. One of my favorites is having his little hand knit hat that he wore framed and hung with the baby hats his siblings wore.

It's important to me to include him in special ways during holidays and seasons, and I've found that other people take their cues from us. People really don't know what to do unless they have been through losing a baby. Some people don't even mention his name because they're afraid to make me sad, whereas, I want someone to tell me when they think of him. I want to hear his name. We say his name often; it's beautiful to us.

Thank you so much, Sara.  Owen's name and story is beautiful to us all!