Noah: 13 Stories of Trisomy 13

Next in our Trisomy 13: 13 Babies, 13 Stories series we have the strong and handsome Noah Alexander. I was first told a bit about Noah's story by Shannon, the ultrasound technician who worked with Noah's family. When she heard about our daughter Violet from a mutual friend she realized the comfort Noah's family and ours could bring each other in the common thread of missing our darling babies.

We do have so much in common!  We live close enough to get together occasionally, we both home school and blog (Noah's mother Jenn writes at Treasuring Life's Blessings) and we regularly attend the same Sweet Pea Project events.  

Jenn, who do you share your life with?
Kevin, my husband of 15 years and my sweet children; Sarah & Susan-14, Hannah-12, Erik-10, Noah would be 3, Olivia-2 and Ava-9 months

Can you introduce us to Noah? What would you most want us to know about him?
My 5th child and second son is Noah Alexander. His life was a miracle and he was such a fighter! The doctors said he would be born premature and tiny but he was born 9 days late and was too big for the preemie clothes we had for him. They warned us that if he even survived labor he would only live a few minutes; he was born crying and blessed us with 9 amazing hours of life! He had such chubby, kissable cheeks and had the most sweetest baby smell ever!

Can you tell us a bit about how you learned he had Trisomy 13?
At 18 weeks pregnant, I switched from my OB to a midwife in preparation for a homebirth so I missed the “typical” 20 week anatomy scan. My cousin at the time owned a 3D/4D ultrasound business where you can go for a “fun” non-diagnostic ultrasound so she offered for me to have one free of charge. We went in at 30 weeks in hopes of getting some great facial shots but baby (we didn’t know the gender) kept his hands in front of his face. So we went back at 32 weeks hoping baby would finally give us a peek at his face. Again, hands were in front of his face and as I laid there watching the screen, in what felt like slow motion, baby moved both his hands from his face and I saw a cleft lip. In that moment, I just knew we would be dealing with something major despite people downplaying and saying it’s “just” a cleft lip.

We switched back to our OB right away who then sent us to maternal fetal medicine where we had an in-depth ultrasound. The sonographer confirmed the cleft lip and palate but hadn’t said anything else until the end when she said she was going to get the doctor as she saw a few things that she was concerned about. I looked at my husband and said I knew it. Granted, our baby dying hadn’t crossed my mind at that point but rather severe medical issues. The doctor came in and explained in detail, each and every anomaly he was seeing with our precious baby’s body. He said he felt that our baby had Trisomy 13 and is “incompatible with life”. The only way to truly diagnosis this he explained was for an amnio to be done so we went ahead right away to have this done. I wanted to know for sure what we would be facing and have a definite diagnosis. He went on to explain that I was lucky to have carried my baby for as long as I did and that most likely he would die soon en utero and I wouldn’t carry to term. He said if our baby was alive come birth, that most likely he’d die in labor or only live a few minutes after birth. We left that appointment in complete & utter numbness and shock. It wasn’t until the next day when it all seemed to hit me and what we would be facing.

What was his birth like?
Despite what our doctor had told us, I not only carried my son to 40 weeks, I went 9 days late with him! One thing I had been hoping for was to go into labor on my own as I didn’t want to choose my sons day of death. I started in early labor on a Saturday evening, but it never fully advanced and I stayed in that state until Tuesday when my OB said to just go to the hospital that my water needed to be broke for my labor to speed up. After being in the hospital for 9 hours and with only half a push, Noah made his appearance. Before he was even out of me, my OB was turning him so all his siblings could see him face to face. They each had their own disposable camera so of course they were starting to snap pictures as the OB took Noah’s arm and “waved” at the kids. At this point, we didn’t know if he was alive or not as they were not monitoring Noah’s fetal tones during labor. He was placed on my chest and you could tell everyone was holding their breath then suddenly he gave out the sweetest cry ever, our son was born alive!! They immediately listened to his heart rate and had some blow by oxygen placed near his face. We were told our son would be preemie size but he was a whopping 6lbs 10oz & 19” born at 9:06pm July 13th, 2010!

How long did your baby live?
Noah once again defied the doctors odds and instead of only living the few minutes they said he would, he lived 9 hours and 20 minutes. His date of birth & death are on 2 separate days which was another answer to prayer.

How was your time with him?
There are no words to describe our time with him. Each of our children had picked an outfit out for Noah to wear and take pictures of with him in their outfit so our poor son was a dress up doll for a while! (those outfits are now worn on each of their American doll Bitty Babies a friend gave them that they lovingly refer to as their “Noah doll”). One of my daughters wrote Noah a letter before he was born so she got to read it to him. The doctor let each of the kids listen to his heartbeat. It goes without saying that we took a ton of pictures and video of Noah, in fact, we were videoing his birth and caught his first cry on camera! We spent a lot of time passing him around between my husband, kids & myself, just showering him with kisses on his chubby cheeks and telling him how much we loved him. While Noah never opened his eyes, we were blessed to know he could see as his siblings snapped numerous pictures of him, we kept seeing him squint with all the flashes going off!

For a little while after his birth, he remained on my chest as the staff was worried he would die soon after birth. After it was determined he was strong and stable, I relaxed and for a moment, forgot he was going to die. We did all the “typical” things you do with a new baby. After a few hours once everyone left and the nurses let us alone, the kids & my husband got ready to sleep (as they were all staying in the room with me). I settled into bed holding Noah. Due to insomnia that I sometimes deal with, I ended up being awake for every second of Noah’s life. I’m still so thankful for that.

What choices did you make for your baby while he was alive regarding medical intervention?
We had stated we wanted comfort care given and that if he remained stable, we wanted some sort of feeding tube placed. I refused to let him starve to death as I have heard happen to other babies in similar conditions.

What did you choose after his death for memorials?
Prior to Noah’s birth, we had already started making arrangements with our pastor for his burial and celebration of life service. I knew I wanted to put together a slide show put to music to share with others his life in photo’s during his service. We also knew we wanted to have a viewing knowing it would be the only time most people would get to meet our son as there were only a few people who got to see our son alive.

What supports did you have in helping you make these choices?
For both medical and memorial decisions, we pretty much were on our own deciding our choices. I spent many hours searching the internet for stories of others similar to ours and what they did. We met with hospital staff prior to Noah’s birth to go over our birth plan and what our wishes would be. In regards to his memorial, we discussed things with our pastor. I was also introduced to 2 women who had also lost babies several months prior to Noah’s birth. They became dear friends who came along side me to offer support. We also spent a lot of time praying for wisdom in making decisions.

How long has it been since you held your sweet baby?
It has been 3 years and 8 months since I held Noah.

Where are you in your grief journey today?
Depending what day you ask me this, my answer can vary. Looking back overall, I can see the changes I’ve made. Some days I am amazed I am where I am as in the early days, I never thought I’d manage to function again. I’m no longer in the deep, dark pit of grief where I want to roll up in a ball & cry my eyes out every day. I’ve had 2 rainbow babies since Noah. While they have brought joy & hope to our lives, as they grow I am reminded each day what I am missing out on with Noah. Each stage they hit, I grieve over the fact I didn’t get to experience that with Noah. The hole in my heart may be scabbed over but it won’t ever fully be healed. Every so often my scab gets ripped off causing me to have one of “those” days. The kind where I don’t feel like doing anything except letting my grief come to the surface and embracing it for what it is.

What advice would you give to other bereaved parents?
There is no right or wrong way to walk the journey of losing your child. Don’t let others make you feel guilty for what you say, think or do regarding your much loved & missed baby. Embrace your feelings wherever you are in the moment, it’s ok to be laughing one minute then crying the next. Realize that grief is much like a rollercoaster, an exhausting one at that! Try to connect with another bereaved parent who has already been down this road. Knowing you aren’t alone in your thoughts & feelings can really help.

Is there anything else you'd like to add?
While the doctors use the term “incompatible with life”, I prefer “life limiting condition”. My son was very much compatible with life, it’s just part of his body that ultimately wasn’t. Noah proved that the doctors don’t always know what an outcome may be and reminded me of the only True Physician who knew Noah’s days before I even knew I was pregnant. (Psalm 139:13-16) Also, please never hesitate to speak my sons name or ask me about his story. It’s one of the greatest gifts you can give me letting me share about him!!

Thank you so much for sharing his beautiful story!