Disclaimer: There are mentions and photos of child loss which may be triggering to some.
“In late January of 2020, my husband and I found out we were expecting a baby! After five years of marriage, we were beyond thrilled that this little surprise was coming to make our family complete. The news filled our whole family with such joy, and we immediately started daydreaming of our perfect, new addition. We bought our crib and rocker, and got to work on the nursery, soaking up every second of this special time. We were already so full of love for our little pumpkin. We slowly started telling our friends and family that we were expecting, swearing them to secrecy, so that I could tell my immediate family in a very special way, as this would be their first biological grandchild! We decided to wait until the first trimester was over, and our doctor had assured us that everything was looking good for our growing baby.
When I hit the 17-week mark in my pregnancy, and my bump was getting very hard to hide, we decided it was time to share the news with my mom, dad, and sister. We filled two packages, one for my parents, and one for my sister, with baby items, custom onesies we made ourselves, ultrasound pictures, and of course pun-filled notes breaking the good news. Since we couldn’t see them in person due to the quickly rising Coronavirus cases, we dropped our baby boxes in the mail and waited for the inevitable phone calls. About four days later, our phones erupted with FaceTime calls from overjoyed grandparents and aunts, with tears flowing down their faces. This was extremely surprising to them, as they did not think my husband and I would ever have a child of our own. (Honestly, neither did we!) We continued making our plans and preparing for our baby to be here. My husband and I were both hoping for a boy, and couldn’t wait for our 22-week scan, so the mystery would finally be over. The next six weeks were spent trying to come up with a name for the next member of our family, but nothing felt quite right just yet.
Due to the pandemic, I had to attend our anatomy scan by myself. I was so excited to see our little sweet pea, and admire how much he had grown in the 10 weeks since our last ultrasound! I looked on the screen and saw his long legs, sweet toes, perfect spine, and precious arms— and was overjoyed to see my baby! The ultrasound tech checked the gender and I was thrilled to hear her say, ‘It’s a boy!’ Our first son! I was so filled with immense love for this child already. I could not wait to share this news with my family; our predominantly female family was finally welcoming a boy!
I waited and waited for the tech to show me the picturesque profile shot that every mama loves to frame— but that shot never came. She gave me a long string of pictures, and led me back to the waiting room, where I immediately sent all the sweet images to my family members in a group text and announced that we were expecting a son! I could feel the excitement and instant love through the phone. Not long after, I was called back into the exam room to speak with my doctor. He asked me how I was doing, and I responded with ‘I am fantastic!’ with happy tears still in my eyes.
I will never recover from the next words that came out of his mouth. ‘That’s good. Well, I hate to tell you this, but there is a major problem with your baby.’ Darkness. Shock. Instant grief. It felt as if the whole room had disappeared around me, and I suddenly became hyper-aware of the cold table I was sitting on, and the dark pit that had just opened in my stomach. No, this can’t be happening… Not to my precious baby that I could feel dancing around in my belly, so full of life. It is hard to explain the emotions that washed over me in those long moments of silence, but I knew the person I had been up to that point of my life, no longer existed. I was dead, and I had to learn how to function all over again.
The doctor explained that our precious child had a neural tube defect called anencephaly— a rare and random birth defect that is ‘not compatible with life.’ He then continued to tell me that I should terminate my pregnancy, as he would not live more than a few hours after birth. Termination? I know this child. I’ve felt this child move inside me. At 22 weeks, I had bonded deeply with this child, and treasured every sweet interaction. Termination was not fathomable to me, and a truly traumatic thought.
I told him that was not an option. He apologized, referred me to a specialist, and sent me on my way. Alone, heartbroken, crushed. The pain I felt as I drove myself home to deliver the news to my family was earth-shattering. However, this deep wound did not shake my love for my child. Rather, it made me cherish him even more. I drove the short distance home with tears blurring my vision, trying to remember how to breathe. This was a nightmare I needed to wake up from.
The next few weeks after our diagnosis was very dark. We longed for a future that we were robbed of, and dreamt of our child as a toddler, and all the plans we already had for him. Swimming lessons, family vacations, cuddles. Simply watching him grow into the amazing person we knew he would become. We were grieving a life that was still there with us. I’m not sure when, but after we began this grieving process, we experienced a major paradigm shift. As a family, we learned to disassociate from our diagnosis, and celebrate our little boy’s sweet life while we had him earthside. We made a list of all of our favorite activities and places to visit as a family, and made a plan to check each one off with our sweet son/brother.
So we began our journey as a family of five. Crossing items off our list from visiting the baby hippo at the Zoo, to blueberry picking at our favorite farm. We talked, sang, read, and took pictures with Ambrose, the name we decided for our sweet pea as if he were with us holding our hands. While the sorrow was still lingering, the togetherness we felt overcame and turned these months we had together into the best time of my life.
We kept having weekly appointments at the University of Cincinnati, with a care team full of doctors and specialists that showed immense love for Ambrose from the moment he appeared on the ultrasound screen. They made it clear they were there to fight for him, and recognized how spectacular he was. They cried with us, hugged us when we needed it, and time and time again showed a bedside manner that you just don’t learn in medical school. Our doctor shared with us that only 1/10,000 babies with anencephaly make it as far as Ambrose has! At every appointment, Ambrose passed each exam with flying colors. He was swallowing, practicing breathing, doing flips, and growing at an immense rate! He always measured much larger than the average baby at his gestational age. Each ultrasound tech never failed to comment on how extra-large his hands and feet were! He fit right in with the rest of our family in that regard!
With the help of Starshine Prenatal hospice and our care team at the University of Cincinnati, we created a birth plan that hit all of our goals beautifully. Ambrose would be born by c-section at 38 weeks, to give him the best chance of being born alive and having an extended life span. The NICU team would provide non-invasive care that would allow his respiratory system to function at its highest capability, and he would spend each and every moment on earth in the arms of the people who loved him most. Our doctors gave us a 10% chance of Ambrose coming home with hospice care for a short time, which was our ultimate goal and prayer. How beautiful it would be to have our whole family in our own home all together just one time!
We decided that after Ambrose had passed on to his heavenly home, his organs would be donated through Life Source to help other babies, so those other families wouldn’t have to feel the deep pain of losing a child as we did. I would also donate as much breast milk as possible to the Mothers Milk Bank to feed babies in need in Ambrose’s name. The possibility of the positive outcome of helping others through these gifts made our hearts so unbelievably full and truly eased our pain in many ways. Very few children are born with as much purpose as Ambrose was. We couldn’t be more proud of him!
As the months passed, and we checked more and more off of our ‘bucket list’ for Ambrose and he continued to ace his tests at the doctors and surprised everyone with how unbelievably active he was— the most active baby we had ever seen! With each week, we grew ever more hopeful that our boy would live long enough out of the womb to come home. We were praying for a miracle. On August 3rd, we went in for our weekly ultrasound where Ambrose, once again, appeared perfect and healthy. We reviewed our birth plan with the doctor, and left happily staring at the new ultrasound photos we had received that depicted the most adorable baby double chin anyone has ever seen.
That night, we sat in his nursery, as we always did, and read him Shell Silverstein poems from the book ‘Where the Sidewalk Ends.’ We sang him songs from ‘Marry Poppins.’ He gave us huge kicks and rolls, and we all went to sleep with our hearts full of love. That night, I dreamed that he would become a soccer player. The next morning, I woke up and noticed that our boy was not as active as he usually was. Assuming he was just extra sleepy, I ate something sweet and tried to prompt him to move.
Nothing. My heart sank into deep despair, as Tyler and I rushed to triage, where it was confirmed that Ambrose’s heart had stopped overnight. The sweet doctor reassured us that he did not feel any pain, and he showed he was truly a fighter! I believe he was with all my heart. I was overcome with the same pain and emotion that I was thrown into at our 22-week anatomy scan. Again, it was just me, the cold table, and that familiar pit in my stomach. Everything I had prayed and longed for had been ripped away in under a second. Not again… Not my sweet baby… This couldn’t be real.
Within minutes my family arrived at the hospital, and showered us with love and support that made this crushing experience feel a little lighter. From the moment I knew he had left this earth, I began to feel him all around me. His comforting presence ensured me that I could do this. I still felt our connection was so unbelievably strong.
After almost 48 hours of labor, Ambrose Raymond Brown was born at 2:28 a.m., weighing four pounds five ounces, and measuring nearly 16 inches long! Instant love filled the room, and what I thought would be the worst day of my life, was undoubtedly the best. He was just perfect from his nose, that he clearly got from his mama, to his long toes like his daddy. His head was covered with curly blonde hair, and his unbelievably soft hands naturally wrapped perfectly around our fingers. The moment he was placed in my arms was a moment of the truest love I had ever felt in my life. Looking into his face made every second of this difficult journey worth it.
Thanks to the use of a Cuddle Cot, which was donated by another family who lost a child, we were able to spend over 36 beautiful hours with our precious son. This inspired us to donate an additional cuddle cot to the hospital in Ambrose’s name! In those 36 hours, he met all his aunts and uncles, grandparents, sisters, and close friends. Each one smiling from ear to ear as they held our perfect bundle of joy. He cuddled with mommy and daddy, and we read books to him, sang him lullabies, and told him all about his family. He spent every moment of his time on earth in the arms of those who loved him most. My heart was so full of love for this perfect child, I thought it might burst.
Throughout his whole existence, many people prayed for a miracle that would save our Ambrose, but on this day we discovered that the real miracle was getting to know him at all. His father and I could not be more proud to be his parents, and of the fight Ambrose put up. We are so in awe of our son. We chose the name Ambrose because it means ‘immortal and divine;’ two words that describe this boy perfectly. He has impacted so many lives, whether it was through donation, by sharing our story, or the little library we put in our yard in his honor. He will live on through his beautiful legacy, and deep in the hearts of all who knew and loved him.
Instead of a funeral for Ambrose, we chose to have a candlelit celebration of life at our home. Our Chaplain delivered a beautiful sermon, and his grandparents, aunts, uncles, godmother, and sisters honored him with beautifully emotional scrapbooks, poems, songs, and prayers. As a family, we planted a tree with some of Ambrose’s ashes, and his father closed out the ceremony with a perfect Eulogy to his son:
‘Our children are the best of us, our hopes, our dreams, our driving force. Our children teach us everything. You never truly know love until you have one, and you never truly understand the pain until you lose one. Ambrose fought his way into this world, he defied all odds to make it as far as he did because the odds were truly stacked against him. I will carry the fact that my son was a fighter for the rest of my life, because not getting to see his life will haunt me for the rest of mine. I will remember the joy you brought to our entire family, and the happiness as well. The pain will always be there. It may lessen over time, but I will live the rest of my life missing a piece of my heart. My hands will never forget the feeling of you kicking your mom, how soft your skin was, the way you smelled, or how much closer you brought your mom and me to each other. Most of our moments were not spent face to face, and I will forever hate the cruelty of this world that made this so. But I will cherish every beat of your heart that I heard, every kick, and every single way that I felt you move. And I will cherish it for the rest of my life, knowing that my voice was always the thing that got you moving around the most. I love you so very much, and though I may not get to watch you grow, I am no less proud to have been your father.’
As of today, Ambrose has saved the lives of countless other babies who are fighting. We have been able to donate almost 500 bags of breast milk to NICUs all over, and I am still pumping breast milk in his name. The Cuddle Cot donated in Ambrose’s honor was given to the Labor and Delivery unit at the University of Cincinnati, where he was born, and will be there to help give other families those extra, unmatchably beautiful hours with their babies. Ambrose’s father and I still feel our sweet son all around us, and know he is with us every time we feel a breeze run through our hair, or a butterfly lands in the memorial garden we built for him. He is in each of our waking thoughts. Though our arms ache to hold him and kiss his sweet face again, we will never stop smiling when we think of those incredible eight months we got with our firstborn son. We look forward to the day we will see him again, but until then we will find ways to celebrate our Ambrose Raymond every day. ‘If love could have saved you, you would have lived forever.’ In loving memory of Ambrose Raymond Brown.”
This story was submitted to Love What Matters by Alyssa Cousineau Brown and Tyler Brown. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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