Sephora: 13 Stories of Trisomy 13 | Still Playing School

Sephora: 13 Stories of Trisomy 13

By Devany LeDrew | Labels:
Bethany is the mother to the exquisite Sephora Angeline.  In addition to Jenn who had Noah a year before our Violet, Bethany and I also live close to each other.  Bethany was pregnant with Sephora mere months after our quick hello/goodbye with Violet so we were put into contact via the palliative care team at the hospital where we both chose to deliver.  The rarity of a Trisomy 13 diagnosis and yet here were three babies within 3 years.  We've had the pleasure of getting together to visit with our rainbow babies!


(Some of these answers are direct excerpts from Bethany's blog which was written during Sephora's time with them.)

Who do you share my life with?
My husband Chris & son Miles.

Can you introduce us to Sephora? What would you most want us to know about her?
Sephora loved when I sang to her. I sang "You Are My Sunshine" to her every day throughout my pregnancy, and she would usually respond to that song. I'd been told that many T13 babies are deaf, but always thought she could hear me through vibrations or the actual sound. When she was born at 32 weeks, she wasn't responding to any interventions and my husband brought her over to me. When he placed her in my arms, I started singing "You Are My Sunshine" to her. She instantly began to pink up in color! She could in fact hear!

Sephora had curly, dark brown hair, 12 fingers (2 pinkies on each hand), 10 toes. She was 3lbs 9 oz and 16in long. She had the tiniest whimper. She fell asleep in my arms after 4 1/2 hours of life. Every second we had with her was perfect.

Can you tell us how you learned she had Trisomy 13?
We went for our 20 week anatomy ultrasound to see “Baby’s” size, weight, gender, and even get a 3D glimpse of Baby’s face! After looking at all of the not so interesting necessities of my uterus, placenta, etc, the first part of the baby we saw were the legs and butt. This obviously showed us exactly what we really wanted to know about our baby. We are having a…BABY GIRL!!! We saw her hands and feet, her bladder, heart, and her precious little face. In the one 3D picture of her that we got, she was holding her umbilical cord like it was a blankie. It completely covered the right side of her face! We’re so in love with her!

The ultrasound tech was having some issues measuring her spine and wasn’t able to see some part of her heart because of her positioning. When she finished, she told us we would meet with one of the doctors on staff to go over the results of the ultrasound. I didn’t realize we’d be meeting with a doctor after this visit. I supposed it was normal and none of my other friends told me this was standard procedure. We got situated in our room and waited for the doctor to come in. When the doctor came in, the information she shared with us threw us both off of our seats. She told us our baby girl has enlarged ventricles in her brain. “What in the world does that mean?!,” I calmly shrieked. She told us she is not a specialist, so she “couldn't” tell us much more than that. “What a ridiculous answer,” I thought to myself! All we knew at this point…enlarged ventricles are not something that should be seen during an ultrasound, and we’d be seeing a perinatologist to receive a Level 2 ultrasound. This should give us some type of answer and diagnosis. As the doctor escorted us to the checkout counter and explained to the ladies behind the desk what was happening, I could feel the tension, importance, and sense of urgency that this Level 2 ultrasound surrounded us with. I felt the puppy eyes follow us as we left the office with a feeling of uneasiness. My husband, Chris, wrapped his arms around me as we proceeded to the car. I looked up at him and said, “We’re having a little girl, Babe!” I immediately lost my composure and sobbed hysterically in his arms.

We received a phone call from the perinatologist at Maternal Fetal Medicine who scheduled us to come in for our Level 2 Ultrasound today at 3:15pm. I knew if we were scheduled for a visit with the specialist 2 days after our first ultrasound, something was seriously wrong with our beautiful baby girl. We checked in at the front desk and were escorted back to our exam room. We saw everything during this ultrasound that we’d seen 2 days prior. We even got another picture of her profile, another of the bottoms of her feet and a great 3D shot of her face!

After scanning my belly for over an hour, the tech stepped out to go get the doctor who scanned my belly for another hour and a half! He finally put the transducer down and spoke to us very assertively as he explained to us what he saw. Her ventricles are extremely enlarged, and he doesn't know at this point what caused it whether it be an infection, a chromosome, etc. He also discovered she has a hole in the bone that separates her left brain from her right brain. Currently, there is free flowing fluid passing between both sides of the brain, which could be the cause of the enlarged ventricles. As far as her heart….she’s got a very severe heart defect. Though her heart is audible and physically beating, he’s not convinced that her heart is making the right connections to the proper veins and arteries to ensure her body will be receiving the proper blood flow that her body will need after delivery. Something else he noticed while looking at the top of her head, is the lack of a developed set of eyes. Not only does she have a severe brain issue AND a severe heart defect, but now our precious baby girl hasn't developed eyes and will be blind?! What did we do wrong to create such a perfect baby with so many horrible abnormalities?!

What is our next course of action supposed to be? He believes with the number of abnormalities she has, she will not have much of a chance to survive. Therefore, he suggested we perform an amniocentesis to determine if she does in fact have a chromosomal abnormality. So now we wait.

When we received the results, we learned Sephora did, in fact, have Trisomy 13. I think I stopped breathing when I heard those words...Trisomy 13. Every single cell in her body has an extra 13th chromosome. This diagnosis explains the brain, the heart, and the eye issues. He explained most Trisomy 13 babies are very small at birth…if we even make it that far. Some make it to term and can live up to one year. Some die in utero. Some pass during the labor process. We won’t know what the outcome of our baby will be until we know, essentially. We will carry her for as long as we are able. I’ll labor and give birth to her, and maybe we’ll be able to spend a few minutes, hours, or days with her before she passes. We’ll still wake up and put hands on my belly and feel her move every morning. We’ll watch my belly grow as she grows, and maybe still God will offer us a miracle. --Which we did!

What was her birth like?

Sephora's Birthday

Friday, May 18, 2012 ~ 32 Weeks 3 Days ~ Part 1

After dinner on Thursday evening, I had the most awful heartburn ever which made breathing very difficult. From 10:30pm until 5am, I was up walking around the house just trying to stay calm and breathe easier. I thought just maybe I’d gotten a small case of food poisoning. At 5am, I finally was able to lay down and slept until 8am. I got out of bed and walked around because I was feeling better, but not 100%. Chris decided I should call my doctors just as a precaution, which I did…and they got me in for an appointment at 1pm. I had laid on the couch most of the morning until it was time for my appointment. I even tried to eat a little bit of lunch, but for whatever reason, I wasn't able to eat more than 2 bites.

My brother took me in to the doctor’s office and waited with me until they called me back. They tested my urine, checked my weight, and took my blood pressure. Very quickly I’d learned I had severe amounts of protein in my urine, I’d gained another 5 pounds, and my pressure was 160/112! All I knew at this point was, NONE OF THIS WAS GOOD NEWS!!! The midwife came in and said she was going to send me to triage to be monitored further. We headed to triage, heard Baby Sephora’s heartbeat on the monitors for the few hours we were there, and had blood work done. When the blood work results came back, the nurse looked at me with a very concerned look in her eyes and told me we were staying. The pressure I had been feeling in my back and chest, was actually caused by liver pain. My liver enzymes were through the roof, which is why my protein levels were so high. This also caused my blood platelets to go down and my pressure to skyrocket. They gave me an IV to run magnesium through me so my pressure wouldn't get so high that it would cause me to have seizures. The side effects from the magnesium were not fun. It made me feel like I had the flu…I was really hot, nauseous, really puffy from fluid, and sleepy while it was in…and I had to have it running through me for 48 hours!!! Needless to say, I was not very happy.

At 8pm, they came to my room and did another round of blood work to see if the magnesium had caused a change for the better in any of my numbers. We got the results back at 9:30pm and everything in my body was getting worse! We were notified that we’d be taken back for an emergency c-section, because the only cure for preeclampsia is delivery. I immediately looked at Chris and cried. We’re only 32 weeks. Her lungs aren't ready. I AM NOT READY!!! I didn't have a choice. I was really sick due to the preeclampsia, and this was going to be her birthday.

Part 2

When they made the decision to take my husband and I back for a c-section, I looked at my nurse and begged for her to get the “Now I Lay Me Down To Sleep” photographer (an organization of professional photographers who artistically document babies who have an early terminal diagnosis at or before birth) here as quickly as she could. Diane, the photographer, arrived within 20 minutes of calling her, and she stayed with us for 4 hours! The medical staff took us back around 10pm to the operating room. I drank an “anti-nausea” something or other as they put my blue cap on my head and wheeled me in to the OR. The bed ride made me nauseous, and I ended up throwing up the “anti nausea” drink that I’d had minutes before arriving. The staff helped to sit me up and gave me a stool to rest my feet on as they began to prepare me for the epidural before the procedure. After they put the medicine in my back, my feet began to feel warm almost instantly. This is when they helped to turn me back around and lay me on the flat bed in the room. I was draped with all of the blue curtains and given oxygen. It only took a few minutes for the spinal to take effect, and my body was numb enough to start the procedure. At this point, Chris finally was allowed to come in and sit next to me. He held my hand from the moment he sat down…I remember squeezing it so hard, not because I was in pain, but because of my nerves and the intensity of the moment. I could feel the doctors squeeze, tug, and pull…nothing was painful. As the time got closer to getting to Sephora, they told me I’d feel a lot of pressure. I don’t believe I actually did though. I did however, feel them grab and turn her. She was laying sideways across my belly, for the past few weeks of my pregnancy. I literally felt them turn her vertically. I remember looking at Chris and saying, “Here she comes!” …and they lifted her out. Sephora Angeline was born at 10:25pm. She weighed 3 pounds 9 ounces, 16 inches long, and she was perfect! Chris was able to cut her umbilical cord, and then he went over to the table where Sephora was laying with the nurse and NICU doctor. When Chris stood up to leave me, one of my midwives sat down next to me and grabbed my hand. She told me how beautiful our little Sephora was. The nurse and doctor gave her a tiny bit of oxygen and decided to clean her off just enough to wrap her up, hand her to Chris, and bring her over to me to hold. At this moment, I didn't know that the medical staff felt she only had a few minutes before she would pass as she had not started breathing, at first, when her cord was severed. I was just in awe of our beautiful baby girl. I sang “You Are My Sunshine” to her as I held her. It wasn't my best performance, but I sang it to her every day while she was in my tummy, and I was determined to sing it to her so she could hear me sing it again.


Her cry was so sweet…and she cried for a few hours. It reminded me of a little whimper and squeak. What a soothing sound to hear our beautiful baby cry. They moved us from the OR to the recovery room where Sephora began to pink up a little bit and cry some more. We’d already been given more time with her than all of the medical staff had ever thought we’d be blessed enough to get. Slowly, our visitors started coming back to visit us in groups of 2. After all 15 of them had come back to visit, they decided we were stable enough to be moved to our room. When we got settled, we moved Sephora from my arms to my belly, and gave her a sponge bath. We dressed her in the one outfit we’d purchased for her that read “Daddy’s Girl” on the chest and passed her around to the family and friends that had stayed just so we all could cuddle and love her for as long as we could. Before all of our guests left for the evening, I asked if we all could sing “Happy Birthday” to our Beautiful Angel. It was the most beautiful and tender moment I've ever felt in my life. Our singing even quieted Sephora’s sweet little cry.

The day she passed away -May 19, 2012

After singing “Happy Birthday” to our precious Sephora, I held her in my arms wrapped in her warm blankets all night. My nurse came every hour to check my vitals, just to make sure I was getting better. Each time she came in, I also had her listen to Sephora’s heart and lungs as well. I had noticed I was hearing her tiny little cry a little less than I had when she was born, which we were told would eventually begin to happen. Her breathing had slowed, and her heart was still beating. I just held her close to me and sang to her some more. I really did my best to keep her warm. The next hour came, as did my nurse…she listened to my heart and lungs and then to Sephora’s. She looked at me slowly with very sad and loving eyes, and told me she could no longer hear any heart or breath sounds. I immediately turned to Chris who was laying on the cot next to me, shook my head, and began to cry. She had passed peacefully in my arms, and I hadn't even realized it. The nurse called the NICU doctor in who took Sephora back to the bassinet in the room so he could get a good listen as well. Our little Sephora had passed at 2:50am. They wrapped her back up and handed her back to me. I held her all night as I tried to sleep. Sleep never came to me that night.

How long did your baby live?

Sephora Angeline lived 4 ½ hours. She was born Friday, May 18, 2012 at 10:25pm via c-section. She fell asleep in my arms at 2:50am on Saturday, May 19, 2012

How was your time with her?

Our time with her was scary at first, but completely enjoyable once I had been sewn up from surgery. She had visitors in the recovery room to OoOo and Ahh over her. Once we arrived in my room, we sang Happy Birthday to her, bathed her, dressed her, and held her close. It was a beautiful Hello/Goodbye!

What choices did you make for your baby while she was alive regarding medical intervention?

We opted to give Sephora oxygen at birth if she needed it. When they took her over to the table to dry her off, she wasn't breathing well and the oxygen didn't help her much.

What did you choose after her death for memorials?

Since I was extremely sick with severe preeclampsia and HELLP syndrome, I was in the hospital for 6 days after her birth. We decided not to have any memorials or services for Sephora. Emotionally, we weren't ready to be bombarded by family and friends who had no clue what we were going through, at a funeral for our precious angel. We had Sephora cremated. Her ashes are currently in her baby brother’s room, and I also have some in a pendant that I wear around my neck.

My best friend threw a “Celebrate Mommy & Sephora” party a month after Sephora was born. It was a fun time to cuddle other tiny babies, while also receiving many pampering gifts for recovery!

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

We relied on the palliative care team for many of our decisions and recommendations. Our family and friends were there to support us as well, but no one really knew what to do or to say.

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

It has been 20 months since we last held our precious Sephora.

Where are you in your grief journey today?

I believe we are finally in the acceptance phase of our grief. We never will forget or replace our sweet Sephora, but we remember her daily when we see that precious little dimple on her baby brother’s right cheek. The dimple, I’m told, is the kiss of an angel before leaving Heaven.

What advice would you give to other bereaved parents?

We learned our diagnosis at our 20 week anatomy scan. For the entire weekend following this scan, I grieved for my daughter. I was sad. I would bawl hysterically. I was angry. I hate to admit this, but there were times in my anger that I wished I wasn’t pregnant. Then the sun came out on Monday morning, and I started singing “You Are My Sunshine” to her all over again. Sephora was sick. She was my baby. My daughter. My first child. I loved her. My advice to you…don’t deny yourself the privilege of getting to know your baby. Don’t try to repress your feelings of happiness, sadness, anger, hate, joy, fear. Allow the tears to freely flow, and surround yourself with others who have experienced the loss of a child. You’ll find that you are not the first to have a baby pass away, and unfortunately you won’t be the last. In my experience, the bereaved mothers kept coming out of the woodwork everywhere I went! No one wants to be in the club of bereaved parents. You’re never alone!

2 comments :

  1. Your sephora is precious. Thank you for sharing her with the rest of us.

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    Replies
    1. Thank you so much, Em. We appreciate that very much.

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