Joshua: 13 Stories of Trisomy 13 | Still Playing School

Joshua: 13 Stories of Trisomy 13

By Devany | Labels:
The moment I laid eyes on Joshua I was smitten!  Heather and I were pregnant at the same time and connected online.  Her son was born a few months before Violet so watching the time, love, and photos he had with his family had me holding my breath as I wished for the same with our daughter. His life was beautiful and his smile and eyes had me no longer afraid of meeting my own baby with Trisomy 13.  I will forever be grateful that his family shared him with the world because of the comfort and peace he brought me as we anticipated following in the same bittersweet footsteps mere weeks late.

Heather also quickly crocheted us several small hats for Violet and the one that fit, the infamous white hat with the pink flower, was the exact same size as the one that fit Joshua.

Who do you share your life with? 

I've been married to my husband, Nathan for 15 years and we have 5 children here on earth in addition to Joshua.

Can you introduce us to Joshua? What would you most want us to know about him?

Joshua Henry Eley was born September 3rd, 2011 at 36 weeks 5 days weighing 4 lbs., 3 oz and was 15 inches long. He died 21 hours later on September 4th. He was beautiful and precious, and despite the differences from the Trisomy looked so much like his brothers and sisters. He changed each member of our family for the better, and his brief life had purpose.

Can you tell us how you learned he had Trisomy 13?
Joshua’s Story

There was a pink plus sign and I was, honestly, a nervous wreck. We had toyed with the idea of having another baby (our 5th!!) but now it was a reality. I had been dealing again with some pretty significant anxiety before finding out we were pregnant, so I was feeling really overwhelmed. After a few weeks time, I had started to wrap my brain around the idea and was starting to get excited.

Around  16 weeks into the pregnancy, I got a call a call from my friend  who also happens to work at my OB’s office. I could hear the concern in her voice as she told me some of my blood work had come back with a 1 in 90 something  chance of spina bifida. She was very sweet and shared that the tests can have high false positive rates.  I honestly wasn’t that worried.  Things like that don’t happen to me.  How many times had my anxiety and worry turned out to be unfounded?  I decided everything was likely fine, but was also Googling and coming to terms with the idea of having a special needs child. I could handle this, I reasoned. I dutifully made an appointment with the perinatologist in town and confidently prayed for the best possible outcome.

I don’t remember the actual date, but I know the appointment was Good Friday 2011.  We brought our oldest kids with us to the ultrasound. We’ve always included them in this way and expected to find out the gender along with the details of baby’s condition.  We had planned a gender reveal party and were going to drop off the results in an envelope to the baker so she could make the appropriate cake. I could tell a couple minutes in that something was wrong. The ultrasound tech lost her smile. She was looking at the screen expressionless and kept mentioning that she was trying to get a better view. My heart sunk, and then the doctor came in. I could tell from the look on his face that this was going to be one the worst days of my life. We sent the kids out trying to smile and seem unconcerned.

It felt like time stopped, like I was watching a movie.  “This can’t possibly be my life,” I thought. I heard words like “lemon shaped head,” “hypoplastic left heart” and “incompatible with life.” I could see the problems before my eyes on screen, but more than that I saw another precious little Eley baby. He suspected a trisomy of some kind, so we went ahead with an amniocentesis right then to get a better idea of what we were facing. All the color had drained out of Nathan’s face and he held my hand as the doctor encouraged us to consider terminating the pregnancy confident that we would lose our baby during the pregnancy or shortly after birth.  I felt numb in the office and in the waiting room as we gathered up the kids and tried my hardest not to completely fall apart as we explained to them on the drive home that their baby brother or sister was very, very sick.  They asked us honest questions, and we gave them age appropriate honest answers.

 “How sick is the baby?”
“Very. The baby’s heart didn’t form right.”
“Is the baby going to make you sick, Mom?”
“Is the baby going to die?”
“The doctor thinks so.”

Days later we got the call confirming a diagnosis of Trisomy 13.  When the full results came back we learned that it wasn’t a random occurrence, but rather caused by a balanced translocation that I carry. We also learned that we were having a baby boy, and quickly picked the name Joshua which had long been Nathan’s favorite.

Do I regret having the kids there that day? Sometimes. I felt guilty that they had to experience those very painful and confusing moments, but it was really just the beginning of many difficult days and many heartbreaking conversations you never want to have with your kids. I couldn’t protect them from this. Right from the start we were in this as a family.  It wasn’t just my pregnancy, my baby, my journey. He belonged to all of us, a precious gift we wouldn’t be able to keep. Our bond as a family and with God was never stronger, that having been said I cried on Nathan every morning when I woke and every night while falling asleep.  And so we waited . . .

All that summer, I prayed, scoured the internet, read books, and connected with other carrying to term moms on message boards and Facebook trying to prepare myself for the day that finally came on September 3, 2011. I had made it to 36 weeks, 5 days. Despite all the tears and heartache that were my constant companions during the pregnancy, I woke that morning to contractions with such a feeling of excitement. Today was the day we were going to meet our little boy! Other baby loss moms had told me they had felt this way and I couldn’t comprehend how that would be possible, but it was true. It was baby day, and I just desperately wanted to hold in him my arms.

What was his birth like?  How was your time with him?

It was a very short labor, too short for an epidural. All the other meds I was given made the first few hours of his life a fog to me.  Nathan said he wasn’t crying when he was born, and his color didn’t look good. He weighed 4 pounds 3 ounces and was 14 and half inches long. He had 6 toes on each adorable little foot and an extra pinky finger.

 His color and condition improved, and we got him dressed in his outfit that said “little brother.”  Family had gathered in the waiting area and quickly filled the room, all taking turns holding him while our Now I Lay Me Down to Sleep photographer recorded the day.  There was a tremendous sense of joy mixed with sadness in the room. The kids were in love with his extra pinky finger and took turns snuggling him.  Our pastor and his wife came to visit with us and pray over him. Joshua handled all this loving like a champ, but when he did get fussy he and I got to do some kangaroo care. It was a bittersweet, beautiful day.  We smiled and cried, hugged and snuggled and Joshua loved every minute.

As the evening progressed Joshua’s little body started to fail him. Sunday morning, 21 hours after entering this world, he left it. The kids came and Nathan met them outside the room to tell them Joshua had died.  It was a gut wrenchingly awful day. I really have no words. I still to this day have a very difficult time looking at the photos from that morning.

What choices you make for your baby while he was alive regarding medical intervention?
We decided we weren’t going to make heroic efforts. We had been cautioned that there was a good chance that Joshua would be stillborn, but we still hoped that would not be the case.  We left off the monitor during labor. We held him all day and night.  I tried to nurse, but he had no ability to suck. In the middle of the night when he cried, our very sweet nurse sat with me and helped me try to feed him something, first formula and then sugar water. I was so used to my other babies that I had a hard time accepting what the doctor had told me. His brain was so underdeveloped that he literally couldn’t eat. The most immediate threat to Joshua’s life was his heart defect.   The left side of his heart was too small to effectively pump and oxygenate his body. Some children survive HLHS with multiple surgeries, but the Trisomy 13 diagnosis meant that he wouldn’t be a candidate.  His heart eventually got tired and the HLHS took him from us the fastest just as the doctors had suspected.

What did you choose after his death for memorials? 
We initially thought we didn’t want a memorial service, but as the weeks passed we realized that we were going to need that opportunity to grieve and also to share Joshua’s life with all the people who had prayed and cared so much for us. We had a beautiful service a couple of weeks after his death. (We had chosen to have him cremated.) I still was kind of in shock and really couldn’t put something together, so our amazing family, church and friends  took the reigns and made it a beautiful day that honored his memory.

As far as items that memorialize him, we have absolutely everything he wore or touched down to his belly button clamp and snippets of his hair. I have a necklace that I wore at the hospital and a picture of him holding it in his tiny little hand. A lovely memorial stone in our butterfly garden with his name and birth date on it is a reminder that he really was here for a little while.  My most treasured possessions are all the photos of our time with him.

What supports did you have in helping you make these choices?

I scoured the internet and message boards after Joshua’s diagnosis. I read  the book “I Will Carry You” which was an difficult, but necessary read for me. Gathering information from other mom’s and dad’s experiences was extremely helpful in preparing for his birth.

I had read about Now I Lay Me Down to Sleep, and was fortunate enough to meet with our photographer months before his arrival. It was a very honest, thoughtful conversation about issues that may arise. She asked me lots of questions about what I wanted to happen in various scenarios, and I felt so much more prepared for what was to come. I also felt like a mommy, because if I couldn’t fix this, we could at least honor his life. One of my only regrets from the whole pregnancy and birth is not doing the maternity photo shoot she offered. I couldn’t see how I could smile. My belly made me sad a lot of the time, but now I wish I had more to remember him by.

How long has it been since you held your sweet baby?
It’s been two and half years since we held Joshua for the last time. He would be three this coming September.

Where are you in your grief journey today?

I look back 2 and half years out and still can’t believe this happened to us, to me. I’ve blogged more off than on about Joshua’s death and the grief I/we experienced then and now. Each time I realize how much I have to say, and how difficult it is to express it on a page.  Writing this took me back to some memories and feelings I’ve tried to push down especially in the last few months.

Looking back to the past, inevitably leads me to evaluating the present.  I can say that I think of Joshua many times every day. Sometimes the thoughts are fleeting. Other times, they bring a heaviness and tears, but I can feel my heart healing a little bit with each memory. I am able to smile now when I think of his sweet face. I love to hear his name. I’m at a healthy place with my grief.

 What advice would you give to other bereaved parents?
For any carrying to term moms, I believed that I was grieving during my pregnancy. I thought I had cried all my tears and that things might get easier once we had said our goodbyes.  I was completely overwhelmed by the grief I felt once I had held him my arms.

If you have other children as we do, you’re also dealing with their grief and the emotions and behaviors that accompany that kind of trauma. We have been so blessed to be a part of a grief support for children that gave them a safe place to talk about Joshua.  Grief looks different in kids, and they frequently keep those feelings to themselves in an effort t to avoid upsetting mom and dad.

I found it incredible helpful to know other moms who’d lost a baby. Some of those women, I met through formal groups and others where already sprinkled throughout my life by God. At my lows, seeing someone else who was surviving and smiling gave me hope that the weight would get lighter.

The pain of the loss never goes away, and grief looks different on everyone. I was really incapable of doing anything but taking care of my husband and kids for a long while, and sometimes I didn’t do that very well. Getting up and feeding everybody took all my energy, and it got worse before it got better. I think I was truly struggling more in the six months to a year after he died than I did immediately after. I felt like there was an expectation that I be closer to “back to normal” by then.

Let yourself have all the time you need to grieve and be gentle with yourself. One of my baby loss mom friends gave me a great piece of advice. “If you can’t be selfish after your baby dies, when can you be?” It’s OK to do what you and your family need and let the noise fade into the background.

Heather, once again, you and Joshua have comforted, awed, and floored me with your honesty and how you share it with the world.  From the bottom of my heart, thank you.


  1. so beautiful. so beautiful that all you mamas carried to term. these stories are so sad but so very important for all other mothers who are or have faced these situations. I am so in awe by every one of these stories and all these loving families

  2. What loving brave parents these are!