Prenatal Life Limiting Diagnosis & Carrying to Term | Q&A with Jamie Le Sesne Spears
I am honored to share an interview with Jamie Le Sesne Spears about receiving a prenatal life-limiting diagnosis for her son Reid. You can get to know Jamie a little more and follow along as she navigates life after loss over on instagram: @flylittleblackbird.
Jamie, thank you for sharing your story with us. We are so grateful.
If you or someone you know has received a life-limiting or terminal diagnosis for your baby,
please check out this resource page with information and helpful resources for navigating this season.
HI JAMIE, TELL US ABOUT YOURSELF.
My name is Jamie. By day, I am an Early Childhood Educator and by night, I am an Adjunct Professor at a local university. My husband, Cory, and I have a puggle and two cats. I love all things fall and a great cup of coffee. I spend a lot of time redecorating my home, taking walks with the puggle, painting, and pouring into my work.
TELL US ABOUT YOUR DIAGNOSIS.
Our story of loss is a winding road, like most. Ours began with infertility. We tried right after we were married to start a family. We started with the mentality – why not! If it happens, it happens! Well after a year or so it never happened. We started going to doctors and doing testing to discover we both had complications adding to our infertility.
We decided to try IVF and to our amazement we were blessed with a pregnancy! I was hesitant but excited, scared but hopeful. I thought the worst was over. We overcame infertility!
At our 20-week appointment, we went in – like most – eager to find out if it was going to be a Reid or Rosilyn. We were shocked and excited to find out it was Reid – a boy! But as the doctor walked in, the walls started to cave. It was in her eyes. I saw it.
She proceeded to tell use that there was an abnormality in Reid’s ultrasound. She could not be for certain, but we needed to see a maternal fetal specialist as soon as possible. For the next two days, I was bounced around from specialists to MRIs spending hours in ultrasounds until it was confirmed –
a Congenital Diaphragmatic Hernia – CDH.
I couldn’t even pronounce the words. As the doctor explained that part of his diaphragm was not going to fully form and his organs were going to be forced into his chest cavity, I literally was just trying to wrap my mind around the words – Congenital Diaphragmatic Hernia – they were foreign, scary, and not in my vocabulary.
Then they started talking about statistics – Your son has a 20% chance of survival.
TELL US ABOUT THE OPTIONS YOU WERE GIVEN AND YOUR DECISION TO CARRY TO TERM.
At our 20 week appointment, it was so unclear what survival and health would look like for Reid. We were given the choice to terminate our pregnancy.
What made you choose to the pregnancy to term?
We had tried for two years at this point to get pregnant. I had just finished a successful IVF round – it was our first try, and we had finally overcame infertility. Cory and I were not ready to say goodbye and their was more hope and uncertainty than loss and pain.
Is carrying Reid to term a decision you would make again?
Every day. I like to explain grief as every emotion exploding, firing at the same time. And someone once asked me, “Even happiness? Are you really happy, too?”
Yes.
I have so much joy from knowing my son. He is a part of me. He is my baby.
HOW DID YOU PREPARE FOR YOUR BABY’S BIRTH?
With a 20% survival rate, I was hesitant. I was scared. I was excited. I had hope. With CDH, Reid was healthy inside of me so I just I started taking everything day by day, appointment by appointment. I took time to sit and feel him kick, my husband chose the song Blackbird by the Beatles as his song and we played that to him nightly, I took walks with him, and I intentionally spoke to him and prayed over him.
We did have Baby Showers. This was our first child and we wanted and needed to celebrate him. I did not open my presents at the showers, however. I was such a mixed bag of emotions. I didn’t know if I would slip into grief or joy when I opened them. We asked that family and friends didn’t buy us clothing, knowing that if he did survive he would have an extensive NICU stay. We prepared our home for him. I decorated the nursery, washed what little clothing we did have, and I even had a going home hat and outfit planned – just in case.
I had to hold onto hope. I had to move forward – 20% chance.
IS THERE ANYTHING YOU WISH YOU HAD DONE DIFFERENTLY OR KNOWN TO DO/EXPECT?
Honestly, no. I think it is so important to hold onto hope while being realistic with the diagnosis. I knew what my reality was and I had to fit that urge to slip into grief, depression, and anxiety daily. What helped me was holding onto the hope of meeting Reid. I took it day by day. Each step and each moment I took as a hurdle to cross. We just kept crossing hurdles until we reached a finish line.
TELL US ABOUT YOUR BABY’S BIRTHDAY.
He came early on July 11, 2017. We had a team of about 20 doctors and nurses present during delivery. Our first hurdle was over. He was alive! We almost lost him that night, he fought hard but his little life was just beginning. That day he was placed on ECMO and stabilized for his repair surgery. I could go into all the ups and downs, but honestly, I don’t remember. I just remember the feelings – feelings of love, hope, fear and uncertainty. They were so strong, but so was I – he needed me. This was my time to be his mother on earth.
The next 17 days we read books, prayed over him, sang songs, and gave all the kisses we were allowed to give. We found joy in everyday and made a point to document the joyful moments on little stars that hung in his room. He fought hard, but his little body wasn’t made for this world. His last moments were beautiful. We told him stories of his parents love for each other and him. We held him tight and told him about where he was going. We told about Jesus and how he will have a grand adventure with Him.
Saying goodbye was beautifully devastating. I will never forget that moment that Jesus took him from my arms. Reid was strong, he brave. I am so honored that I was able to fight it beside him.
WHAT DO YOU WISH YOU WOULD HAVE KNOWN ABOUT LABOR AND DELIVERY WITH A DIAGNOSIS LIKE THIS?
We were so prepared for our labor and delivery. We had a plan A, B, C, D … and I had memorized all of them. I think what I was not prepared for was being separated from him. His first surgery was less than 24 hours after birth. He was at a nearby children’s hospital and I was still in the maternity wing next door. My husband spent more time with him than I did the first 24 hours. I am so glad Reid and Cory had that time, but it was devastating to not be there talking with the doctors.
There is nothing I could have done differently and I am sure nothing could have prepared me for those emotions. Being alone in my maternity wing, trying to breast pump, because 20%, might have been the loneliness moments of the entire experience.
WHAT SURPRISED YOU ABOUT GRIEF?
I thought grief was an isolated feeling. However, it is so much more. For me, it is all the feelings. Every feeling you can imagine, imploding inside of you. It takes work to isolate each feeling, acknowledge it, and let it work its way through your heart.
WHAT WAS ONE WAY YOU FOUND HEALING IN YOUR GRIEF?
We sang Blackbird by the Beatles to Reid every day and night. We collect blackbirds and associate the red-wing blackbird with his little spirit. I love the summertime in Indiana because the red-wing blackbirds are everywhere! Somedays I take drives purposefully on the country roads just too see one.
The most meaningful thing I did was paint a ceramic cupcake for him at one of those pottery painting places. I randomly went by myself one day – it was a day or so before his first birthday. As I was painting, Blackbird came on the radio. I sat there, by myself, painting and just sobbing with joy. I truly felt his presences – it was as if the veil between our world and heaven was a little thinner in that moment.
WHAT ENCOURAGEMENT/ADVICE WOULD YOU GIVE TO SOMEONE WHO LOVES A MOM WHO HAS JUST RECEIVED A SIMILAR DIAGNOSIS FOR HER BABY?
Let her know you are there. Let her know she can do this and on the days when she can’t you will.
I felt most loved when people would just show up. When I was at my worst, people would ask, “what do you need?” And all I could say think was “Him. I need Reid.” I had no clue what I needed nor did I have the capacity to tell others how to help me. It really helped when people would just send me a gift card or text, “What would you like for dinner?” They asked or gave in a specific way.
WHAT’S THE ONE THING YOU WISH PEOPLE WOULD ASK YOU?
It is more what I wish they wouldn’t ask me – haha. The question, “how are you?” had a whole new meaning after losing, Reid. It was such a heavy, loaded question. How am I supposed to answer that and what do you expect me to answer?
What if I say “I am doing well today!” Will you think how can she?! She must be a superhero or have no heart?
Or what if I say, “It is really hard. I miss him a lot.” Will you think she must be crying in her bed all day depressed?
I had to learn to stop caring what others thought of my emotions. It took a while to learn that my grief journey is mine. My emotional journey is mine and it is ok to be where I am at.
WHAT ENCOURAGEMENT WOULD YOU GIVE TO ANOTHER MOM WHO HAS JUST RECEIVED A SIMILAR DIAGNOSIS FOR HER BABY?
Celebrate, celebrate, celebrate.
It was so hard. It is so hard. But I never regret celebrating, hoping, and honoring his life. I have the privilege to be a mother to a strong boy. His life has moved mountains in this world and I know that his story will continue to do so.
Also, grieve. It is okay to grieve while pregnant. I learned that you can do both, grieve and celebrate, they are not separate experiences or emotions. In fact, I believe a part of grief is celebrating.
Grace upon grace. Give grace to those who don’t know or say the wrong things. But more importantly, give yourself Grace. Grief is messy and there is not one right way to experience it. Someone once asked me, “have you gone through all the stages of grief?” And my response was, every month or so! Grief is like the waves coming to shore. It is always coming and going. Sometimes it is strong than others.
Lastly, take the maternity leave. I shortened it by a couple weeks, but I needed the rest, emotionally.
LASLTY, WERE THERE ANY RESOURCES THAT WERE PARTICULARLY HELPFUL TO YOU THAT YOU WOULD RECOMMEND?
Honestly, finding others who have experienced infant loss. Community is so important.
