Prenatal Life Limiting Diagnosis & Carrying to Term | Q&A with Katherine Fauss

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I am honored to share an interview with Katherine Fauss about receiving a prenatal life-limiting diagnosis for her son Bennett Asher.

Katherine, 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 our resource page by clicking the button below.

Life Limiting Diagnosis Resource Page

HI katherine, TELL US ABOUT YOURSELF.

I'm a wife to my husband, Jacob, of almost nine years, mommy to a precious three-year old, friend, and part-time teacher.

TELL US ABOUT YOUR DIAGNOSIS.

The pregnancy seemed to be textbook normal up until this point. I was extremely nauseous, fatigued, and did not have any strange symptoms. I struggled with severe anxiety during and after my first pregnancy with my three year old son. I regularly saw a Christian psychologist who, combined with my husband and church community, helped me breathe life again. Anxiety was still present during this pregnancy, but it certainly was not as rampant and constantly robbing me of joy.

New Year's Eve of 2018 forever changed our lives. I was eighteen weeks exactly, and we excitedly awaited our anatomy scan. Once I got situated on the ultrasound table and the ultrasound technician arrived, I felt very uneasy and nervous. My husband, son (who was two and a half at the time), and mom were in the room with me and I remember taking a deep breath and tried to reassure myself everything would be okay. Shortly after the ultrasound began, I knew something was wrong. I did not know what, but the ultrasound technician's demeanor quickly went from cheery to quiet. I have heard of this happening, but I figured it would never be something I would experience especially since the pregnancy seemed to be perfect. The ultrasound technician kept saying my baby was curled up so it was difficult to see the gender and other significant views of our baby. When she finished, I asked her if everything looked okay and her shaky voice explained to me that sometimes babies are sleepy and they cannot always get clear views of everything.

When the maternal fetal medicine specialist came in, she asked me if I had a normal pregnancy and delivery with my first child. I thought that was strange because the anatomy scan with my first child did not start out with questions like those. She made small talk with us about my son, and then became very quiet. She turned to us and said she was seeing some things of concern, and suggested that my mom take my son to the lobby.

She resumed by telling me and my husband that she saw several anomalies such as an omphalocele, severe scoliosis, and clubbed feet. She went to have the other doctor in the practice come in for a second opinion. My husband grabbed my hand and reassured me that no matter what the outcome of the appointment was, God is in control no matter what. The other doctor came in and confirmed the findings. He looked at us with compassion and told us to hang in there.

At this point, I was not comprehending what was being told to us. She explained what implications these anomalies may have, and the combination of these were deemed incompatible with life outside of the womb.

She diagnosed our child with Limb Body Wall Complex and said the condition is fatal.

I felt like I was having an out of body experience. Never in a million years did I ever expect to hear those words describing my child, much less the severity of his anomalies. She explained to us that this condition is typically not genetic and is extremely rare. The cause is unknown, and the likelihood of it occurring again is very low. Our child's gender was not able to be determined in the ultrasound, so we waited eight days to receive results from blood-work. We found out there were no genetic indications, and that we were having a boy...our precious Bennett Asher.

TELL US ABOUT THE OPTIONS YOU WERE GIVEN AND YOUR DECISION TO CARRY TO TERM.

The doctor said according to the state, we were within the window to interrupt the pregnancy. My husband and I told her that is not something we were willing to do. We asked her if my health would be at stake, and she said my body would recognize this pregnancy like any other "normal" pregnancy. Our faith in the Lord was strong at that time, but let's just say it has strengthened tenfold since then. Our care plan moving forward was to continue routine prenatal care with by OBGYN and receive ultrasounds with the high-risk care team every four weeks until around twenty-six weeks or so. I would then have ultrasounds biweekly and eventually weekly starting at thirty-two weeks.

Once we shared the news with friends and family, the Lord did not hesitate to execute His plan. That night, our church community rallied around us and babysat our son so my husband and I could have some time to somewhat process what we had been told earlier that day. Not even twenty-four hours later, another mama in my neighborhood connected me with her neighbor whose daughter passed away from anencephaly three years ago. My OBGYN called me and extended her support for me and my family. She reassured me that she would be there with me 100% of the way. The Lord whispered to me through those conversations that He will provide us what we need when we need it (Deuteronomy 31:8).

The next several weeks were filled with a roller coaster of emotions. There were several unknowns to us about my pregnancy with Bennett, such as how long I would carry him. We had moments of joy in that the Lord has chosen us to use Bennett’s story for His glory. We also had moments of despair and overwhelmed with the unknown. I struggled with that more than my husband did because Bennett was on my mind all day, every day. I was scared, and some days I just wanted everything to be over. However, clinging to the hope of the Lord’s goodness eventually transformed my mind and heart to truly trust Him throughout the pregnancy (Romans 12:2).

Is carrying BENNETt to term a decision you would make again?

I pray to God we never experience such a devastating diagnosis again, but I know that is a possibility and something that is entirely out of my control. Having seen firsthand the beauty amidst the pain through the life of Bennett, I would without a doubt choose to carry again.

HOW DID YOU PREPARE FOR YOUR BABY’S BIRTH?

Once the shock of Bennett's diagnosis wore off, my husband and I wanted to maintain as much normalcy as we could. We were grateful to have had Labor of Hope, a non-profit organization who serves families whose babies have received a life-limiting or terminal diagnosis, walk alongside us throughout the time leading up to Bennett's birth.

My husband and I met with our neighbors who walked through this journey three years ago. The mom happens to be the Director of Outreach for Labor of Hope. They helped coordinate maternity pictures and answer questions about what to expect for delivery and beyond. We also comprised a detailed birth plan with our OB, high-risk doctor, and NICU team at our hospital to have on file.

IS THERE ANYTHING YOU WISH YOU HAD DONE DIFFERENTLY OR KNOWN TO DO/EXPECT?

While I was pregnant with Bennett, part of me was afraid to become attached to him because I knew I would have to say "goodbye for now" shortly after he was born. After his death, writing to him has helped me feel connected to him and reassure me that I will never forget him. Sometimes, I read other mamas' stories and how some wrote to their babies while they were pregnant with them. I remind myself that our journey with Bennett is and will continue to be different from other babies' journeys. I did what I felt I could do at the time, and I am at peace with that.

What do you wish you would have known about carrying a baby with this diagnosis to term?

I wish I had known that babies with LBWC are typically delivered between thirty-two and thirty-six weeks. Because LBWC is so rare, there is not much research to shed light on why babies with this condition are often delivered within this time frame. However, we know Bennett's birth was meticulously planned by our Creator so we do not second guess the timing.

TELL US ABOUT YOUR BABY’S BIRTHDAY.

Oh, how I love talking about Bennett's birthday! Let me first say that as devastating as it was to receive a fatal prenatal diagnosis, I am extremely thankful for the time we had to pray about and prepare for Bennett's birth. My heart aches for anyone who loses a child. The decisions that have to be made are extremely difficult, especially when they have to be made without time to prepare.

The day before Bennett was born, I was writing out a detailed plan to share with close family and friends. My neighbor who walked through a similar journey three years ago gave me wonderful insight as to what I should think about regarding how I envisioned Bennett's birth. We had a c-section scheduled for May 14. We wanted our OB to be the one to deliver our baby boy, and we desired to have the best chance to meet our son alive. Little did we know, the Lord had different plans. I remember the days leading up to Bennett's birth that I was overcome with a sense of readiness. I was feeling less fearful about his birth and the fact that he would die shortly after being born, if he was born alive. In hindsight, I know the Lord was equipping me for Bennett to be born on April 24, 2019 at thirty-four weeks and two days.

Early that morning around 2:30, I woke up and my waters had started to break. I got a hold of my neighbor, and she quickly came to stay at the house with our son until a community group member could come and take him back to her house. We headed to the hospital and everything moved quickly from there. My husband and I were texting family and friends keeping them informed of what was happening, and that Bennett was going to be born! Unbeknownst to us, our close family and friends were coordinating getting to the hospital to pray and be there to meet Bennett. While they were coordinating with each other, my husband and I did our best to pray, be calm, and rest before meeting our second child. We were warmly embraced by the amazing medical team involved, and our bereavement doula was there to ensure the birth plan we had on file with the hospital was being executed according to our wishes. Our bereavement doula is the neighbor who walked a similar journey three years ago, so having a familiar face who knew exactly what we were feeling was so comforting.

My labor was not progressing quickly, so my OB felt comfortable with delaying the start of the c-section until friends and family could be there. When the medical personnel started wheeling me down to the operating room while my husband changed into scrubs, I was overcome with strong emotions. I was anxious, relieved, but most of all grieving the end of my pregnancy with Bennett. Bennett did not know he had severe physical ailments, and was the safest he would ever be on this side of Heaven inside my womb. Knowing that I would not feel him in my tummy again made me very sad. I felt this to some extent before my firstborn came into this world, but it was different. This felt much more final since I knew his birth would be entirely different. The incredible nurse was a believer, so she prayed over me and reassured me that everything would be okay. I knew it would be, but hearing that was something I needed. As I was wheeled into the operating room, I remember wanting to remember as much as I could about the room...the bright lights, the team of medical personnel who would be caring for my son, and the vitals station in the corner. Once I saw the vitals station, everything felt really real to me. My baby was going to be placed in that bassinet and wrapped in his blue swaddle. My baby was either going to be alive or not alive in that bassinet before he was to be handed to me.

My husband came in shortly after all of the preparation for the c-section was done. The photographer followed in after him. My husband and I held hands and looked at each other through tears of sorrow and joy. At 9:50 AM, Natalie Grant's "At Your Great Name" was boldly playing over the speakers. This was not planned, but we know it was not a coincidence. I didn't hear any cries and I did not know if Bennett was alive or not. The ultimate goal of the medical team was to give me and my husband the gift of time with our son. They gently placed him on my chest, wrapped in his sweet blue swaddle and tiny blue and white-striped hat. He was alive and we saw firsthand the breaths he so peacefully took. Our baby was here, and he was perfect to us. He looked so much like his big brother. We studied every detail of his face, hands, fingernails, and his full head of dark, wavy hair. We talked to him and told him how much we love him and are so proud of him. Bennett's time of death was at 10:51 AM. He assumed his role as our Heavenly missionary without any pain or suffering. He never cried or opened his eyes, but we take comfort knowing that he knew he was loved and wanted.

.In the post-operating room, our firstborn came to meet his baby brother. (He gave Bennett a soft, blue elephant stuffed animal and Bennett gave and identical one to him. Our oldest sleeps with his elephant Bennett gave him every single night. The one he gave Bennett stays in our room with us.) From there, our parents and friends came to meet Bennett. It is sweet to be able to know that even though Bennett is not physically here with us, he has made a major impact on those closest to us and more people than we know. I re-play his birthday in my mind often because it truly was such a beautiful day ordained by our loving God.

Is there anything you would have done differently?

The only thing I would have done differently is choose an urn prior to Bennett's birth. That is not something I knew to do, so it was more overwhelming to do after he was born and passed away than I anticipated. We had a dear friend who coordinated details regarding our son's cremation, for which we are extremely grateful. That helped to make picking out an urn less daunting.

WHAT ENCOURAGEMENT/ADVICE WOULD YOU GIVE TO SOMEONE WHO LOVES A MOM WHO HAS JUST RECEIVED A SIMILAR DIAGNOSIS FOR HER BABY?

Cling to the Lord, and know that each day will be different. Throughout the darkness, there is so much joy to be had in knowing that your baby is a gift from God and is so fortunate the Lord chose you as his/her mama.

If your hospital has a CuddleCot, take advantage of using it for the amount of time that is right for you. Also, know that preparing to say "Goodbye" to your baby's earthly body is extremely difficult. The morning that the funeral home was going to come retrieve his body was extremely difficult. I honestly did not think I could let go. I called my dear friend whose third child passed away from SIDS when she was eight months old. We cried together as I told her I just could not say "Goodbye". She comforted me by reassuring me that his soul was already in Heaven in the presence of our Father. Knowing that my husband and I were not alone in this pain helped give us the courage to tell Bennett we would see him again someday. Of course, we miss him terribly and wish he was here with us every single day, but our hearts and minds are at peace knowing that he is with us for eternity.

Don't isolate. Allow others to love and serve you, even if they may not know how. Connect with organizations like Labor of Hope to help you navigate the next days, weeks, and/or months. Know you are not alone, and the Lord is with you each and every step of the way.

What advice would you give about how to best support a mom who has been given a life-limiting diagnosis for her baby?

I feel most loved by people letting me know they think of Bennett. I know life goes on, but even a text saying Bennett is loved and remembers really comforts my aching heart. I was also blessed to have friends set up a meal train for me and just love me. It is hard to be completely vulnerable and allow others to bless you, but the Lord used Bennett's life to allow me to see the blessings behind the kindness extended by others.

Lastly, Were there any resources that were particularly helpful to you that you would recommend?

The Joyful Mourning Podcast, Labor of Hope, books such as I Will Carry You by Angie Smith, and all the songs by Shane and Shane (our favorite Christian worship artists whose music continues to bring us joy and healing).