Valor’s story: Love, loss, and legacy with trisomy 18
May 31, 2023
Kayla Baxter delivered her son, Valor, on January 10, 2018, at 6:02 p.m. Three hours later she would say goodbye to her baby boy, who had been diagnosed with the chromosomal condition trisomy 18 in the second trimester of pregnancy.
Valor certainly lived up to his name, surviving a 25-hour labor to meet his family before succumbing to his condition.
Trisomy 18, or Edwards syndrome, occurs when an extra copy of chromosome 18 is present in a developing baby. It causes significant intellectual disability and developmental differences in the limbs, heart, and brain. Most babies with trisomy 18 do not survive pregnancy and delivery. Those that do typically live a few hours or days; just 5-10% will live past 12 months.
Counseling parents who are expecting a baby with trisomy 18 takes an expert level of care and compassion because they face deep uncertainty, coping with complex feelings of loss and even guilt.
UT Southwestern’s maternal-fetal-medicine specialists are committed to giving parents the information they need to make difficult decisions about labor and delivery. We help them plan so they can cherish the precious few moments they may get with their baby.
Though Kayla’s time with Valor was brief, she made memories that will endure. She wanted to share her story in hopes it would comfort other trisomy parents and reassure them they’re not alone.
Finding courage with Valor
By Kayla Baxter, Talent Acquisition Partner at UTSW
I was one of the first in my friend group to become pregnant. I was 22, excited, and nervous. Everything went as expected initially, but at 13 weeks I developed vaginal bleeding. My Ob/Gyn referred me to Dr. Stewart, who specializes in treating patients with high-risk pregnancies at UT Southwestern. He confirmed that Valor had omphalocele, an opening where the belly button doesn’t close all the way.
Omphalocele could be surgically corrected if it was the only problem, Dr. Stewart told me. But it wasn’t. My 16-week sonogram showed that the baby's left foot was not properly formed and there was strong evidence of a heart defect. Dr. Stewart recommended amniocentesis at 18 weeks, in which the doctors took a sample of the amniotic fluid to test for genetic abnormalities.
The diagnosis was trisomy 18 – something I’d never heard of. Dr. Stewart gently explained trisomy 18 is a genetic condition that would make it difficult for Valor to survive the pregnancy and delivery. If he did, his life would probably be very short – a few hours or days.
There was no way to know for sure.
I’d done nothing wrong, Dr. Stewart assured me. Chromosomal conditions can be random. Unfortunately, though, there was no way to fix it. As I absorbed every crushing word, Dr. Stewart was patient and kind. Then he asked me how much I wanted to know about Valor’s condition. Some parents prefer not to get specific details after a trisomy 18 diagnosis since options are limited.
I wanted to know everything.
From that point on, I spent day and night researching every definition, recommendation, and statistic about trisomy 18, and asking countless questions to my care team. I needed to understand what was possible. That was the only way I could face the situation.
“Trisomy pregnancies bring waves of emotion, more than a typical pregnancy. Parents may go from excited to concerned to grieving within days or moments, and options are extremely limited. So, we provide space for them to start working through those complex emotions. My goal is for parents to be able to remember how much their child is loved and honored, not just the stress and devastation they’ve been through.”
Preparing to meet Valor
Dr. Stewart and his team stayed by my side through every up and down. They respected my need for information as much as my need to grieve. They answered every question, and I never felt rushed during my appointments.
When we learned the baby was a boy, the whole team celebrated with me. And when I cried with each new anomaly that surfaced during the second trimester, they held my hand.
By week 19, conversations in my prenatal visits had shifted from learning what was wrong to preparing for Valor’s birth. He continued to measure small and there was too much amniotic fluid around him, which is typical with trisomy 18. By the third trimester, cysts had formed on the umbilical cord. He was deteriorating rapidly.
If Valor survived delivery, it was very likely his time with me would be brief. Dr. Stewart and I discussed my options, and I decided to be induced at 37 weeks. Delivering early would give me the best chance of meeting Valor face to face and, hopefully, sharing a special experience in our short time together.
My Ob/Gyn, Dr. Stewart, and the nursing team helped me line up everything I dreamed of for meeting Valor. They didn’t want me to have to worry about making any decisions on the day he was born, so we communicated about special touches that sometimes are taken for granted, like newborn photos and getting his footprints and handprints.
Trisomy parents also have heavier decisions to make:
- Did I prefer a “do not resuscitate” order? If Valor wasn’t breathing at birth, infant CPR might keep him with us a little longer, but chest compressions could harm his fragile bones and organs.
- If he needed oxygen, would I prefer intubation or a mask? A breathing tube could prolong his life, but the medication he’d need to get it could be fatal.
- If he was stronger than expected, would I want him to go to the neonatal intensive care unit (NICU) in hopes of getting more time? Or would I prefer to keep him with me and savor every second?
Dr. Stewart assured me anything I chose would be the right answer, and his team was in full support of my choices. Still, every decision felt big and scary and heavy.
Some people in my social circles asked horribly insensitive questions, such as: “Had I been doing drugs when I got pregnant?” or “What had I done to be punished with a sick baby?”
That’s not how genetics works, I tried to explain, but it was impossible not to feel hurt, angry, and judged. Thank goodness for the friends I made in trisomy 18 support groups, and my UTSW providers. They made sure I never felt truly alone.
Welcoming Valor into the world
Labor was induced the day after my 23rd birthday, and it would be 25 hours before I’d hold my son in my arms. I decided not to have an epidural so I could be fully mobile as soon as Valor was born. Dr. Stewart recommended that we not monitor Valor’s heart during labor; hearing it fail would have added unnecessary trauma to an already unspeakably hard day.
I delivered at Texas Health Presbyterian Hospital Plano, which is close to my home and where my obstetrician practiced before she retired. Valor’s birth was … dramatic. The excess amniotic fluid around him had built up a lot of pressure – he all but shot out of the birth canal with a few big pushes, creating a splash zone that soaked my mom, a nurse, and my Ob/Gyn, who literally caught him in her arms!
At first, I didn't know whether he was alive. The nurses told me he cried, but I couldn’t hear over the commotion. His heart rate was low, and he was hardly breathing when they placed him on my chest. But then Valor began to make a few noises, as if he were telling me all about his little world. I told him I loved him and was so proud of him. My family got to come in and meet him.
My doula, who came from the nonprofit Labor of Hope and who is now a dear friend, helped me through the long labor and helped navigate things after delivery. We had a talented birth photographer take photos and videos, and because we had planned, we were able to get casts of Valor’s tiny hands and feet.
I got to spend a few precious hours with Valor before he took his final breath. Then the nurses brought me a cuddle cot, which helped preserve his body a little longer so I didn’t have to say goodbye so quickly.
The next morning, we held a memorial service in the hospital chapel.
Five years later, the memories are still bittersweet. Getting to meet Valor was the best moment of my life and one of the most painful because I knew it was the end of our story.
Grief is a forever thing, especially when it involves the loss of a child. Through therapy, I’m learning to be gentle with myself every day, especially when my emotions are anything but gentle. As the years have gone on, moving forward has gotten easier; every year for Valor’s birthday I give back to a local nonprofit and perform acts of kindness in his memory.
Trisomy pregnancies happen more often than people realize. Most of the statistics are based on live births, and most trisomy pregnancies end in miscarriage or stillbirth. As a parent, it’s so scary – even if you have supportive people around you like I did. No one can truly understand what if feels like until they’ve walked this walk. But going through this experience made me want to be there for other parents, and I’ve made many treasured connections through my trisomy support groups.
It took me almost eight months to decide on the right name for my son. Every time we’d find a new complication, or he would start to decline, he’d come back stronger than ever.
My little guy needed a name that captured his courage. Valor Cassius fought to live every day of the pregnancy and every minute of his life outside the womb – he showed more strength in our few hours together than some of us gain in a lifetime.
To talk with a maternal-fetal medicine specialist, call 214-645-8300 or request an appointment online.
