‘Sweet dreams baby boy, mummy loves you.’ The tiniest coffin lowered into the ground. That’s when it really hits you.’: Woman loses son to Edward’s Syndrome, ‘We gave him the most love we possibly could’

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Disclaimer: This story includes images of child loss that may be triggering to some.

“After trying for 6 months and after an early-term miscarriage, those two pink lines appeared on the stick in my hand. We were expecting our fourth baby and what we thought would be a completion of our missing puzzle piece. Unbeknown to us, we were destined to forever have a missing piece.

The pregnancy started out like the other three: curled up in a ball next to the toilet or cuddling up with a vomit bag. Hyperemesis is something you cannot understand unless you have also experienced it. It’s truly the pits of hell. At 14 weeks, we popped a balloon, surrounded by family and friends. Out came blue confetti. We thought it truly couldn’t be more perfect. Two girls, two boys–each a best friend for a lifetime.

Courtesy of Anastasia Taylor

Fast forward to 20 weeks, the morphology scan was the first scan my husband didn’t come to. We didn’t think it was a big thing; we had DNA testing done the moment we fell pregnant with our oldest, which came back perfect. There were no signs of health issues with our baby. So, we expected it to go as the others had. Walk in, walk out. We were oblivious to the issues the scan was going to show. We thought we were bulletproof and nothing bad was going to come our way. I was driving home from taking our girls to ballet on a Wednesday afternoon, four hours after the scan, and I got a call. Our obstetrician was on the other end of the phone. He began using that voice–you know, the voice that isn’t meant to cause panic, however, does the exact opposite and causes panic that sits in the depths of your stomach. ‘It looks like there may be an issue with the baby’s heart and forearm. Can you come in tomorrow morning?’ I don’t even remember calling my husband after that. All I remember is this horrendous feeling. ‘Something’s wrong. This isn’t going to be okay.’ That night, no sleep was to be had. Clinton kept saying, ‘Don’t put the cart before the horse, everything will be fine. You’re stressing over nothing.’ We walked into our OB’s office at 9:30 the next morning. Again, not much information was known. We were still blind to what our future held.

We were referred to the head of obstetrics at our general hospital to undergo a more in-detail scan. After meeting with our doctor, Clinton and I were off on a plane for a few days without our children. We were able to cry, process, do as much googling as we possibly could, and spend time discussing all possible outcomes and how we will get through each of them. Regardless of the outcome, this was our sweet boy and we were planning on fighting for him. On Wednesday, one week after our original scan, we walked into the sonographer’s room at our main hospital. The stress, the emotion, and the unknown were eating me alive. To say I’m a control freak is a bit of understatement. At that appointment, we learned what incredible things our sweet boy had done to survive to 21 weeks. Everything that could have been wrong with his heart was wrong, yet the list continued: enlarged heart, next to no left side of his heart, big hole in his heart, heart chambers hadn’t formed, no radius bones in either forearm, abdomen measuring less than 5 percent, fluid around his heart and stomach, and finally clenched fists.

Courtesy of Anastasia Taylor

Termination came up then and there. How, within a week, had we gone from planning our life with four children to now being asked if we wanted to terminate our baby? We were told, along with the list of abnormities, our sweet baby Grayson was ‘incompatible with life.’ An amniocentesis showed the cause of the issues: trisomy 18 or better known as Edward’s syndrome. A split second at conception caused chromosome 18 to triple in every single cell of his body. For no medical reason, that second had determined a life sentence for a baby yet to be born. We weren’t given a choice to fight for him. We were told no medical intervention will take place to prolong his life. Our two choices were terminating or comfort care. We drove to the hospital discussing how we would manage with the older kids and hospital trips with Grayson, as well as work and life with a potentially disabled child. We drove home wondering, ‘How on earth do we tell our children this sweet baby, who has been wanted, planned for, and loved from the moment those lines came up, won’t be coming home?’ In what seemed like a split second, we went from planning nursery colors to being told it would be a smart idea to start putting end-of-life plans in place. Even now, I wonder how on earth you are meant to put end-of-life plans in place when he hadn’t even started his life?

We decided, after knowing the impact Grayson’s health issues had on him, we were going to take it one step at a time. I think at that point, I just needed to focus on tasks to help process. Telling the kids was high up on the list. We believed it was their journey as much as it was ours, and they had a right to know. The main question was, ‘how do we tell them?’ How do you explain death to, at the time, a 4, 3, and 1-and-a-half-year-old? Our oldest understood loss. She understood sadness when it came to having lost a toy. But even we struggled with the concept of death.

We sat down that Wednesday night with the oldest two in front of us. We explained we were so truly lucky because instead of a baby to bring home, we were given the rarest of gifts: an angel baby. We told them Grayson was just too sick to come home, and he had bigger plans. We sat for what felt like forever, trying our hardest to answer their questions of why and how, and holding them as they sobbed, ‘But we want him to come home.’

Knowing at any point in time we could lose him, we decided to give him the most love we possibly could. We wanted to make sure, if we weren’t going to meet him, he would at least know his family. The girls would sing to him, read him books, constantly kiss my belly, and forever tell him how much they loved him. Cooper, our boy, would drive matchbox cars over my belly. Grayson squirmed and wiggled as his big brother would squeal with screams of laughter and play. I like to think during his time with us, he learned the craziness, love, and enjoyment our household has.

Courtesy of Anastasia Taylor

We took every day as a blessing. However, we knew the time would come when we would have to say goodbye. We made plans. At 28 weeks pregnant, we purchased his plot where he would soon be laid to rest. At 32 weeks, we met with the funeral director and picked out what we were to bury him in–all as he kicked playfully inside my belly.

We made it to 37 weeks, full term. When we went for the early scans, we were told my body would do one of two things: either naturally abort or go into protection mode, which would be to gain more fluid to surround him and keep him safe. So there I was, 66 pounds heavier with a belly that measured more than five feet around, as mentally as drained as I have ever been. The moment we found out he was too good for this world, we decided we would continue, as long as he was fighting and as long as we could handle the stress put on us. I walked into my OB’s office on a Monday afternoon, broken and unable to go on. I hadn’t eaten in 5 days. I couldn’t sleep. The pain of how large my uterus was caused taking a breath to hurt. So it was decided the next morning, we were to have our fourth baby.

Courtesy of Anastasia Taylor

Through this time, there were many moments we questioned how we were going to do it. The drive to the hospital was one of the biggest ones. How are you meant to drive to a hospital knowing you were going to give birth to a baby that had no chance to come home? However, when that Tuesday morning came around, we kissed our kids goodbye and wondered if we were going to get a chance to meet our baby and all be in the same room before he was taken from us. We laughed, we joked, and we enjoyed Grayson’s kicks. The induction process was started. Out of the four births, Grayson’s was the most peaceful. We opted out of the monitors. The last thing we wanted to hear was silence where there should be a heartbeat.

Lauren and Douglas Photography and Film
Lauren and Douglas Photography and Film
Lauren and Douglas Photography and Film
Lauren and Douglas Photography and Film
Lauren and Douglas Photography and Film

Then the time came. He was here. Laying on the bed, I turn to Clinton and the only words I could put together were, ‘He isn’t breathing,’ as tears streamed down our faces.

Lauren and Douglas Photography and Film
Lauren and Douglas Photography and Film
Lauren and Douglas Photography and Film

We had spent so long hoping for even a second with our sweet boy. Instead, we held our tiny 5-pound baby in our arms, looking down at him, thinking any second he would wake up. He was too perfect. He had the cutest little button nose, long feet, and a head full of hair.

Courtesy of Anastasia Taylor
Courtesy of Anastasia Taylor

We gave him the best we could. He never knew struggle or pain. He only knew the love we all had for him. We now feel selfish we wanted him to fight harder to meet us. It was a perfect ending to the most perfect baby boy. The last thing he knew was my heartbeat. The last thing he would have heard was the strength and love that was in the room, waiting for him to come earthside.

Lauren and Douglas Photography and Film
Lauren and Douglas Photography and Film

There is something so unbelievably wrong about saying goodbye to your baby. We felt like we were in the foggiest of dreams. Surely somebody was about to wake us up. We laid our sweet baby boy down in his hospital crib. We pressed the nurse’s button and out he was wheeled. We were left empty-handed and broken hearted.

We had the funeral the following week. We saw him one final time, I kissed his forehead and whispered, ‘You are so wanted, you are so loved, and you will be dearly missed. If love could have saved you, you would have lived forever. Sweet dreams baby boy, mummy loves you.’ As much as you think at that time you can prepare for burying your baby, there is no possible way anyone can prepare you for seeing the tiniest of coffins being lowered into the ground. That’s when it really hits you, that’s when the realization of knowing you will never hold your baby boy again, you will never kiss his cheek goodnight and will never have the privilege of watching him grow up, hits you. The nightmare is real, you will forever be left with the largest chunk taken out of your heart. A chunk that can never be filled or replaced.

Lauren and Douglas Photography and Film

At 20 weeks gestation, we learned we would feel true heartbreak. But it wasn’t until we held our still baby in our arms, we would learn how to live when a part of you is missing. We would learn how to miss someone so much it hurts every part of your being. We would look at our children and know they will forever have a guardian angel watching over them.

Lauren and Douglas Photography and Film
Courtesy of Anastasia Taylor

We will spend a lifetime wondering all the what’s. What color eyes did he have? What would he have grown up to be? What would his cry and laughter sound like? What would it be like if he was here? Instead, we are left with what we call a new normal. We are left with trying to learn how to live with the forever grief of a lost baby. We talk about him. We love him dearly and miss him more than words can say. Truer words were never spoken than, ‘No parent should ever have to bury their child.’

Courtesy of Anastasia Taylor

We will live a life worth honoring his. We plan on telling his story to anyone and everyone, as we strongly believe every heartbeat deserves to be acknowledge, loved, and celebrated. We felt alone on our journey to meeting our angel, walking into the hospital to deliver a baby and walking out with a teddy bear in place of what you thought your future held. You hear of so many organizations that say they help grieving families that have lost babies. Yet for us, we had each other, family, and friends. We want to spend our time helping others not feel so alone and break the silence on stillbirth.

I will forever be grateful for how much Grayson has opened our eyes and hearts. If his story can help one other family in their journey, I know we have done our sweet boy proud. On the 30th of July 2019, we gave birth to our sleeping baby boy. That day, we gained an angel and he gained a piece of each of our hearts. Stillborn, still born, still loved.”

Courtesy of Anastasia Taylor

This story was submitted to Love What Matters by Anastasia Taylor of Townsville, Queensland, Australia. You can follow her 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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