Little Fighter’s Journey with Anencephaly
He had perfect round cheeks with beautiful long blonde eyelashes and his daddy’s mouth. I pressed his warm, small body close to my heart. I was holding him. My Bryce. He was more perfect than I could have imagined. I had dreamed this moment so many times over the last nine months wondering what it would be like, how I would feel. Now it was here, and I felt in love. I also felt fear. How long would he stay with us? His Respiratory therapist continued bagging him, helping him do what his body couldn’t do on its own with anencephaly. My husband and I were both emotional telling our son, “We love you. You are so brave. You are our little fighter.” October 29th, 2014 is the day our sweet boy came into our lives and shortly after returned back home to our loving Heavenly Father.
This is our story. It is one I have held sacred and close to my heart for a long time. This is the story of our journey with Bryce, our beautiful baby who was diagnosed with a neural tube defect called anencephaly at 21 weeks gestation.
Choices with Anencephaly
We were faced with the decision to induce labor or continue to carry our boy. We chose to carry him for as long as possible. We also decided to pursue organ donation. This brought us some peace and comfort while anticipating the loss of our son. This is the path we chose. If you find yourself in a similar situation, I want you to know that no one knows how you feel until you’ve been given the option to carry full term or not. Nobody can tell you what is best for YOU.
You are not alone. God knows you and your precious baby. God loves you and you can always turn to him for peace and help in making your decision even though you may not feel like it right now. You may be angry and upset, and it might not make sense. You are right, it does not make sense. I have been there and I have had my dark days. In the end my faith is what carried me through. Know that whatever choice you make, you are not alone, and you have a loving Savior who cares for you, and knows the exact feelings you are experiencing.
I am a Mother to an Anencephalic Baby
My name is Kim and my husband is Bryce. We have been married for 10 years. I feel privileged today to share our story about our little fighter.
In March 2014, we found out we were expecting our second child. We were excited to be adding another baby to our family. At 16 weeks we found out it would be a little boy. Our life seemed perfect. Our little girl would soon have a little brother to play with.
At 21 weeks gestation our lives were turned upside down. We went in for our targeted ultrasound, and received the devastating news that our son had anencephaly, which is not compatible with life outside the womb. We were given the option to induce labor, or to carry full term. After discussing our options with our doctor, for us, we knew we couldn’t induce labor. We chose to carry our sweet boy for as long as his heart was beating.
Emotions that Follow Diagnosis of Anencephaly
The next few weeks after the diagnosis of our son were some of the darkest and hardest days in our life. We were grieving the future, knowing what was to come. I felt lost, angry, confused, and numb. Nights were always the hardest. I would wake up crying in the middle of the night and go out into the living room so my husband and daughter couldn’t hear me and I would shove my face in a pillow and cry.
I became angry with our situation and at God and asked questions like “Why us?” “How could this happen?” “Why my sweet boy?” “Are we not faithful enough?” We had already had the heartache of two miscarriages. I would also question myself, wondering if I could really do this. Questioning if I was strong enough.
During my dark times I would try to focus on my blessings, such as my beautiful baby girl, my strong and loving husband, the ability to get pregnant, our health, and our wonderful family and friends, but it was hard. I honestly felt numb, but at the same time… I could feel peace. I had moments where a feeling of love would wrap around me, and that’s when I knew that we were going to be okay.
Long nights turned into mornings, and I would put on a fake smile and pretend I was okay for family and friends. I felt like I had to be strong for our family. It was an emotional rollercoaster. Sometimes all I could hold on to was that I knew, without a doubt, I would carry our son for as long as I could, no matter how hard it would to be.
Organ Donation with Anencephaly
Both my husband and I are nurses, and with our experience in health care, organ donation came to mind. As we researched, we found that health care providers had differing opinions on organ donation with a baby with anencephaly. We weren’t sure if organ donation was an option for us. At my next doctor’s appointment, we brought up this question. Our doctor was amazing. He truly embodied the role of patient advocate. He considered all of our needs throughout the entire process. He never pressured me into making a decision on carrying full term or not, and took into consideration all of our thoughts and desires throughout the process.
Our doctor contacted Intermountain Donor, and got us in touch with a specialist. As we met with our specialist we found that it was possible, but uncommon to donate organs from a baby who is anencephalic. This news gave us hope. Our donor specialist was incredible and helped us tremendously. Throughout the entire process, we never felt pressure. It was always our choice to choose organ donation or not.
Meeting Our Little Fighter
October 29, 2014 at 39 weeks gestation we chose to deliver by c-section to give ourselves the best odds of holding our baby boy alive, as the birth canal would have been to traumatic for him. At 8:25 am our sweet boy was brought into this world. The nurse placed baby Bryce into his father’s arms- the man he was named after. Bryce then placed him on my chest. My life was forever changed in that moment. Holding my precious baby, knowing we had little time with him and trying to memorize every little detail of our beautiful boy.
While waiting for his arrival, there had been many emotions. I was excited to meet him, nervous of the unknown, fear of little time, and everything else in between. When I finally held Bryce in my arms, I was overcome with the feeling of LOVE, deep unconditional love and peace. I was holding a perfect child of God. Shortly after baby Bryce was placed in my arms he squeezed my hand letting me know he was aware of me. I felt like that was a tender mercy from God, letting me know that little Bryce was acknowledging that I am his mother. Bryce had perfect round cheeks with beautiful long blond eyelashes with his daddy’s mouth. He had dark curly hair with the sweetest little nose. Little Bryce was perfect. The love in the room was tangible.
Saying Goodbye to Our Little Fighter
Baby Bryce’s color was quickly changing, and I could tell he wasn’t doing well. I gave him to the nurses so they could care for him and help him breathe as we had discussed earlier. Bryce went along, to be with his son in the Neonatal Intensive Care Unit (NICU). Shortly after, a nurse came back and told me that little Bryce was having a hard time and they were currently giving him CPR. My doctor stapled me up to quickly get me out of the OR and into the NICU to be with our boy.
As we reached the NICU, I found out they had been unsuccessful in trying to intubate our son. This was because his airway was not fully developed. To get air into his lungs, they began to “bag” him. My heart broke seeing my little fighter like that. They gave me little Bryce to hold while they were bagging him. Our daughter was able to come into the room and meet her little brother. She was 22 months at the time and she was so sweet and tender with him. She kept giving him kisses and hugs. All of our immediate family was able meet little Bryce. After our families got to meet our son, we decided it was time to let him return back home. It was one of the hardest decisions, but we knew it was the right time.
I am a Father to an Anencephalic Baby
Little Bryce’s Father’s words….
We knew that our time with our son was going to be short. We had to try and soak up every second we had with our son before he was taken for organ donation. As he was bag-masked for ventilation, we got to hold and love our sweet boy for what we knew would be a short time. As attempts to intubate failed, we knew that our time would be even shorter. We took turns holding him and expressing our love for him.
He had full cheeks that received many kisses from Mom, Dad, and his big sister. As he came into my arms, his dwindling heart rate picked up some. It seemed a sign given to me that he was expressing his excitement to be held by his father. When the time was right, 1 hour and 38 minutes after being delivered, we chose to stop breathing for him. I continued to hold him and slowly watch his vitals trend down. We expressed our last sentiments at that time, and when his heart rate ceased, he was taken directly for organ donation, in hopes that his short life and precious organs would provide life and vitality to another individual. It was a tear-filled, heart wrenching short time that we had with our son, but we were so thankful for that time.
Our Baby Continues to Live
Artist: Tessa Brown
Our faith brings us comfort in knowing that we will be reunited with our son again. I have no doubt about it. I know that we will be reunited with our sweet boy. That faith and knowledge has helped time and time again to soften the ache in our hearts. We will never stop thinking of our son. We love and miss him with every bit of our hearts. I can’t wait for the day that I get to kiss those big round cheeks again and let my little fighter know how much we’ve missed him.
The Gift of Medical Research and Organ Donation
Although his life was short, baby Bryce continues to give the gift of life and furthering medical research through organ donation. Baby Bryce’s kidneys were successfully transplanted into a woman from California. The transplantation of his kidneys was just the second successful kidney transplant with Intermountain Organ Donation from an infant with anencephaly. His heart valves being too small for a recipient, went to research along with his liver and pancreas. His lungs went to a facility that is doing great things in advancing care in Cystic Fibrosis patients. Baby Bryce’s brown fat went to a doctor who has been able to successfully regenerate his brown fat which he has been able to do only one other time. I was able to meet this doctor at a conference, who told me he receives many calls from people asking to use the brown fat from baby Bryce for their research. Although we would rather have our baby boy with us, it brings us comfort knowing he has had a huge impact on so many lives. Even though Bryce’s life was short, he touched the hearts of many. He inspired us to be a little softer, kinder, and gentler.
Our Support Team
We have been blessed with the love and kindness of others through the act of service. Our doctor was amazing and never left our side throughout the birth of our son. He took the morning off to be with us and comfort us as needed. The Labor and Delivery and NICU staff were phenomenal. The respiratory therapist was an angel. She bag-masked our sweet boy for 1 hour and 38 minutes. The members of the organ transplant team were truly genuine and kin. The hospital was amazing and made sure all of our wishes and desires were met. The amazing photographer captured all of our sweet moments with our beautiful family. We are thankful for our amazing family, friends, and church members who supported us throughout the entire process and showed us unconditional love. Our hearts have been forever changed and touched through the love and countless acts of service that were given to our family. We truly will never be the same and have learned a great deal about life throughout our journey with our little fighter.
The Grieving Process
“Grief is like the ocean; it comes in waves, ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.” –Vicki Harrison. I can tell you that it is not easy to learn to swim. I have learned that everyone does it differently and that’s okay. My husband and I grieve in our own ways and have different coping mechanisms for processing and dealing with our emotions.
Grief is a roller coaster of emotions. You will have your good days and your bad days. You could be having a great day, then all of a sudden a smell, a sound, a thought, or an image of a sweet baby, or an expecting mom passes by and just like that you are spiraling down into heartache and despair. It takes all your energy to work your way back up to feeling okay with the world again. I learned that others have good intentions, but sometimes say things that can be hurtful. I’ve learned to think to myself, “bless their heart” and “at least they are trying” with a smile on my face. I loved when people would come up to me and just say, “I’m sorry, this is hard and we love you.”
Anniversary dates and holidays are hard. I find myself on edge and emotional, constantly fighting back tears. It can be hard for a friend or family member to understand. I remember having feelings of being all over the place emotionally and getting upset with family. They were damned if they do or damned if they don’t do something. It’s a tricky state of mind, I wanted people to be around and to be there, but I also wanted my space and to be left alone. See… tricky… I didn’t even know what I wanted. It is hard processing all of these emotions. If you have a loved one suffering the loss of a child just be there for them. They will have their bad days. Let them know you love them. Be understanding and be forgiving of them. Grief is a vicious cycle. Again, just be there for your loved ones. They are trying to process all of their emotions, which can be lonely and confusing. They are “learning to swim.” Be patient and loving.
Pain Can Nurture Personal Growth
I have learned that service can help ease the pain. Try to help those in need. Go outside and feel the sun on your face. Pray for strength and guidance. The pain deepened my relationship with my Savior and solidified my testimony that he is aware of our exact circumstances. You will have your hard and dark days, and sometimes you feel like you can’t go on, but I promise you this, YOU can. He knows our pain and he is always there to comfort us, even when we feel alone. A lot of times our prayers are answered through the service of others. With the little time we had with Bryce, he has taught us a lifetime of lessons. I have learned to have peace with the unknown and the “why’s” in life, living my life in a way that would make our sweet Bryce proud. Until we meet again Bryce. I’d like to end with a poem that was written for our Bryce by my cousin.
We were right
to think you’d fight.
It wasn’t because you kicked,
made us so aware you were
there inside, on your way here.
You fought for life
as much as you
were filled with it.
You wanted to arrive
as much as we wanted
Thank you for fighting,
for struggling to meet us,
for saying hello, for
allowing a goodbye.
You are our newest memory,
one we get to save
all the rest
of our days.
Our little boy.
Our sweet boy.
If you would like to contact Kim regarding her story please do so at firstname.lastname@example.org