Savannah: 13 Stories of Trisomy 13 | Still Playing School

Savannah: 13 Stories of Trisomy 13

By Devany | Labels:
Amber virtually introduced me to Angie and her charming baby Savannah.  Savannah has the same middle name as my Violet so with all the shared names and being born within 3 months of each other, we felt an immediate bond in imagining our girls all together.

Who do you share your life with?

I share my life with my husband Nathan, my Son Jeramiah, my daughter Savannah ( who is now an angel), my daughter Zoe, and soon to be a son Connor due in April! 

Can you introduce us to Savannah? What would you most want us to know about her?

My trisomy baby is Savannah Marie Hawley. She was born on August 14, 2011 and passed away on August 22, 2011. She was my easiest pregnancy and we had no idea she was sick until on August 13 my blood pressure went sky high and they told me to go to labor and delivery and be checked out. (This was a month early she wasn't due until Sept 10.) My doctor came and saw me the next day and told me they were going to go ahead and take her now because my blood pressure wouldn't go down. On August 14 she was born!!! I remember when they held her over the screen I said wow you look just like your dad! She was beautiful and perfect!! Later that day they came and told us she was going to have to stay in the nicu and that is where our nightmare began. We never knew Savannah was sick until the day she was born and we didn't realize how sick until she was transported to a local children's hospital. 

Can you tell me a bit how you learned she had Trisomy 13?  

We didn't know Savannah had Trisomy 13 until after she was born. We thought we were going to have a perfectly healthy baby until she got here and they said that she had something wrong with her heart (which ended up being 3 things wrong with her heart), she had horseshoe shaped kidneys, and a few things wrong with her brain. A few days later they told us they were running blood work to see if she had Trisomy 13 or 18 and they told us that if she did they could not do the heart surgery she needed due to having Hypoplastic left heart syndrome. Two days later our nightmare became a reality when they told us Savannah had Trisomy 13 mosaic and they couldn't do anything else for her. We were heartbroken and had to make the hardest decision a parent could ever make and stop the only medicine keeping her heart going. (It wasn't fair for us to make her suffer anymore.) We decided to let her pass peacefully in our arms in a private room at the hospital. I am also grateful (if this sounds weird I'm sorry) that she came early because when we met with the Geneticist they told us that if she was born full term she most likely would have been a stillborn baby. I am so thankful every single day that Savannah made my blood pressure spike so we were able to have the most amazing 8 days with our sweet girl!

What was her birth like? 

Savannah came a month early. They had me go into the hospital because I was seeing spots just sitting still. When I got there my blood pressure was through the roof high. The next day they decided to do a C-section because my blood pressure wouldn't go down.

How long did she live? 

 Savannah was with us for 8 amazing days! We never left the hospital the whole time she was with us.

How was your time with her? 

Our time with Savannah was amazing! We didn't know how sick she really was or that she wasn't going to make it most of the time so we always were excited to see what was to come everyday! Even after we found out she wasn't going to make it we still loved every single minute with her! The best thing ever was holding her, her looking at us, and her holding our fingers!

What choices did we make as far as medical interventions? 

We had her on a medicine for her heart and a Si-pap machine until we found out she had Trisomy 13 and that they couldn't do anything for her and wouldn't be able to do her heart surgery. After that we kept her on her medicine for two more days till we were able to make a decision on what to do and to let our families hold her before we took her off of everything.

What did you choose after her death for memorials? 

We had a Full Catholic Mass for her and then had her buried where my husband and myself are going to be buried.

What help did you have in making these choices? 

We decided not to have any help making any decisions because we wanted it to only be our decisions and not have anyone else's input.

How long has it been since you held your sweet baby? 

In August it will be 3 long years.

Where are you in your grief journey today? 

I think I am doing pretty good with my grief. Don't get me wrong I still have days and times when I feel like I am at the very beginning of it all again but for the most part I am doing good!

What advice would you give to other bereaved parents? 

I would tell them to take it one day at a time. Some days are harder than others and some days you feel like you don't even think you can move on but if you have a good support group or someone to talk to it will help a ton!! Plus I was told grief is a circle that never ends so if you think that you have moved on and then are regressing remember it is all a circle of emotions.

Is there anything else you would like to add? 

I want anyone to know that at first after you lose your baby you feel like your world will never be the same again which it won't but the longer it has been the easier it does get! Also I will always be here for anyone day or night that needs someone to talk to, just listen, or even to cry with.

Read more stories in our series on 13 Babies with Trisomy 13


  1. Amber, thank you for sharing your sweet little savannah with the rest of us. What a beautiful baby the world was blessed with for eight days.

  2. beautiful. I love the part about how grief is a circle, never ending - because it is and never does end, just lessens a bit over time and then hits you again. much love to you and your family <3

  3. We honor Savannah's life and journey. Thank you for sharing!

  4. My niece was so amazing and has two wonderful parents, the struggles that they have overcame are amazing. Savannah is such a strength for me one that I will nevet be able to express completely ....I have three of my own children that I adore niece made me understand how short life truly can be and that we must live it to the fullest everyday

  5. This series is heartbreaking and inspiring all in one. You wonderful parents are amazing to me. I am so happy for this series and for Devany for bringing more attention to these lives. I am sending virtual hugs to each and every parent in featured in this series.