Hannah: 13 Stories of Trisomy 13 | Still Playing School

Hannah: 13 Stories of Trisomy 13

By Devany LeDrew | Labels:
Heather shared with strength and grace the story of how a rainbow baby isn't guaranteed.  Their rainbow, Hannah, had Trisomy 13.   

Who do you share your life with?

I live with my high school sweetheart, Caley. We have been together since my senior year in 1989 and were married in 1998. We have an amazing son, Reese, who will be 13 in January. Also, in our house is the memory and spirit of our first daughter, Emma Grace, lost in utero due to Fifth's disease 6/28/07.

Can you introduce us to your baby? What would you most want us to know about her?
Hannah was long wished and prayed for. After losing her sister, Emma, she was to be our rainbow baby. Things were perfect until our 20 week u/s. After Emma, I had met Angel Moms with losses of many different types. When they started to tell us about her cleft lip, heart issues, etc, I said out loud "you suspect Trisomy?" They were shocked by my knowledge. We were devastated and I screamed out "I cannot do this again!" When my usual early labor began at 23 weeks, they did not stop it. Hannah was born via c-section 8/23/09 and lived in our arms for 111 minutes. During that time she was baptized and only knew love. She and her sister have taught our family how to put our lives and trials in perspective. Their memories live on through our project, Emma and Hannah's Gift, where we gift the hospital where Hannah was born with bereavement packages each year on Hannah's birthday

Can you tell me a bit more about her official diagnosis of Trisomy 13?

We went for our anatomy scan at 20 weeks. Since I had had problems with my first pregnancy and then lost my daughter during my second pg, I had received countless scans already and our main "concern" was hoping to find out the sex of the baby. The tech was good...pointing out things we saw. Then, as she concluded, she said, "Let me get the doctor. I see some concerning things with the baby's face and heart." I began to bawl. After losing our first daughter, Emma, I had met many other Angel Mommas and I knew about Trisomy. I sobbed into my husband's chest and yelled "I cannot do this again!!!!!!" 

The doctor came in and starting talking and I blurted out "You suspect Trisomy of some kind?" She looked shocked and said, "Yes". We were ushered into another room where we had to fill out forms and then after a while another lady came and asked us to come to her office. Turns out, she was a genetics counselor. She began to go over our "options". Mind you, we had just been given this POSSIBLE devastating diagnosis maybe an hour ago. She was pushing termination before we even had answers. After a few minutes of this, my usually quite husband said "Have you ever lost a child?" to which she answered, "No". My husband said "Well, we have and we are not listening to any more of this." He then took my hand and out the door we went.

I called my doctor who had become our friend. He asked us to come straight to his office. We all cried together. He arranged for us to go for an amnio at the same world renowned maternal/fetal medicine specialist that we had seen with Emma. Two days later, I had that done and the doctor told us that without results but simply looking at HER, he was pretty sure it was T-13 or T-18. So we found out we had another daughter and that we would probably lose her too at the same time.

Three days later, we got the official results....Full Trisomy 13.

What was her birth like?
We decided to be induced. My past pregnancies were hard on me and since she had holoprosencephaly, we knew she could not survive. There was, sadly, no need to put my body through the stress. Had we had any hope, I would have done whatever it took to get her here safely. I went to the hospital on Thursday afternoon and they began pitocin. By Friday afternoon, I had made no progress. They decided to try Laminaria. Saturday came and no change. My MFM decided that my body was not going to respond and that we would need to do a c-section. That was performed on Sunday with my husband and Mom with me in the OR.



How long did your baby live?
Hannah lived 111 minutes.

How was your time with her?
Our time with her was, understandably too brief. My mother made her a crocheted coccon. I had bought her a blanket. Our dear, longtime friend came to the recovery room and baptized her while she was alive. My aunt came and took many pictures. My mother in law came just after she was born and was able to hold her. We kept her with us for about 9 hours. She was held and loved her whole life. I kissed her many times and told her I loved her.

What choices did you make for your baby while she was alive regarding medical intervention?
Because we induced at only 23 weeks, they would not offer her any support.

What did you choose after her death for memorials?
We had her cremated in her little cocoon her Mimi had made along with her blanket I had for her (I cut a piece from it to keep) and a little teddy bear my aunt had for her. Our plan was to bury her with my maternal grandparents. We had a headstone made with her name and info along with that of her sister as we had never been offered her remains and wanted to honor her, too. The priest that we wanted to do the service could not do it on the day we wanted, so we decided to wait a while. 4 1/2 years later, the headstone is in place, but Hannah's ashes are here at home with us. Not sure if that will ever change.

We also have begun a Memorial Gift that we do in honor of our girls called Emma and Hannah's Gift. Every year on Hannah's birthday, we deliver bags to the hospital where she was born. Inside are handmade hats and blankets, a letter from us, grief resources, a card with the Dragonfly poem on it and a dragonfly charm to be given to newly bereaved parents.

What supports did you have in helping you make these choices?
The medical choices? Our dear sweet doctor. The memorial ideas? Our families.


How long has it been since you held your sweet baby?
Hannah was born August 23, 2009. It has been 4 years, 6 months and 21 days

Where are you in your grief journey today?
It is a roller coaster. Some days I think I have made real progress only to find myself back in the pit. Having already lost a daughter, I thought I knew what this would feel like. Having a second loss was SOOOO much harder for both of us. I still cry more than I like to admit. I have nephew just a couple of months younger than Hannah would be. I keep him often and some days I LOVE it. Other days, it is such a sad reminder of what I SHOULD have. I long for them to be growing up together. I long for my son to have a living sibling.

What advice would you give to other bereaved parents?
Let yourself speak of your child. Let no one make you feel bad for ANY feelings you have. Be gentle with yourself. Take time to grieve and take care of yourself. Let others help you and know that when people do not speak to you about your baby, it is usually simply because they don't know how. Educate them.

What wise words, Heather.  Thank you for sharing Hannah and Emma with us!

4 comments :

  1. She's beautiful, thank you for sharing your story. God bless!

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  2. <3 Much love to you, Heather. Hannah and Emma will always be in my heart.

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  3. Thank you so much for sharing your beautiful story and those adorable pictures. You have two amazing angels who know exactly how much they are loved.

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