‘When would you like to terminate?,’ she asked. ‘NO. We are his parents.’ My husband and I had just been hit with such horrifying news.’

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“Michael and I met at the tail end of high school one night out with mutual friends. After that we’d see each other in passing, but there was nothing there. One day I went into work, and there he was he was, one of the new-hires. From that point forward, a deep friendship emerged, eventually leading to classic story of love, marriage, and a baby carriage. We had our first son, and then another son, and finally a beautiful daughter.

In the late winter of 2018, we found out we were going to be welcoming a 4th boy into our beautiful family and we couldn’t have been more thrilled! That was until our routine anatomy scan when I was 20 weeks pregnant. In May of 2018, we went in for our scan. The ultrasound tech had a worried look on her face, and asked to be excused a moment. From there, our pregnancy changed from dreaming of what he’d look like…to would we ever even get to meet him, to hear him cry or laugh, or see him play. The ultrasound tech came back with a Maternal Infant Specialist who told us our son had what looked like a lethal form of skeletal dysplasia, she said he most likely wouldn’t make it to term, much less survive.’When would you like to terminate?’ she asked. My husband and I had just been hit with such horrifying news and we said ‘NO. We are his parents, you can’t even say for certain that he’ll die-and even if you could, we have to do what’s best for him while he’s still here. What are other options?’ So a series of testing was performed, we got sent to specialists for further scans. We got sent to a pediatric cardiologist, and for a fetal MRI. It was never good news. For weeks there was always an appointment, and each new person was afraid to tell us their findings, which was usually the same as the last.

Genetic testing didn’t reveal much other than it could be some form of Osteogenesis Imperfecta. Osteogenesis imperfecta (aka, brittle bone disease) is a disorder that affects the bones, causing them to break easily. People with this condition are incredibly fragile. It is either genetically passed down or a sporadic event. It’s actually a form of dwarfism- there are quite a few types, some compatible and some non-compatible with life due to such severe growth restriction usually in the chest area. After our MRI, we sat down with the doctor and he said, ‘I do believe your son has severe growth delay that’s not compatible with life.  I don’t expect him to last in utero beyond 30 weeks. It does seem to match with the Osteogenesis diagnosis type II.’ Which is a lethal form.

I asked what to do. I was holding onto hope, I wasn’t throwing in the towel that easily. But if that was his fate, I wanted to protect and love him for as long as I possibly could. So I asked if I could stop the testing, and just wait out and enjoy what time we had left. The doctor looked me directly in the eyes and said, ‘Of course. You are allowed to deal with this in whatever way you can. It’s our job as physicians to give you all the details. But then it’s our job to ultimately support your decision.’ So we went back to our original OBGYN told him we’d like to see this through with him. He immediately got on board. My favorite quote of his, ‘We’ll prepare for the worst, but hope for the best.’ And we did. From meeting with a funeral home and having arrangements in place, to meeting with the hospital department heads. We got everyone on board with our comfort care birth plan. We found a photographer, to document the pregnancy as a beautiful reminder for our children and to help in their grieving.

Close up of pregnant woman's stomach with hands on it
Courtesy of Amanda Dillon

Everything was in place, and though that gave us peace of mind.. as we approached the dreaded 30-week mark, it definitely got more stressful. I found myself worrying about every twinge, or lack of kicks. My husband is a contractor and he was always worried about being too far from me, or being blocked in on a job site so that he could get to me quickly if I went into early labor.

Pregnant woman walks on dock while holding balloon in one hand and husband's hand in the other
Courtesy of Amanda Dillon

We got bumped up to weekly check ups to check for his heart rate, and growth scans to monitor progress. He had slowed. His heart was good but he was stuck under 2 pounds. 30 weeks came…and went. Then 31, and 32, and 33….by 38 we were so full of hope. He had hit a mini growth spurt at the last second, and was over 3 pounds. We were praying that maybe it would be a life compatible form of Osteogenesis. We had our c-section date, everything was in place. But, like all good plans, you got to have the curve ball! Four days before my scheduled c-section, in the early morning hours of October 20th my water broke. But luckily my doctor had the overnight shift so he was there and said come on in he’d be waiting with my whole team. We quickly got the kids loaded up and both our parents were woken and told to hurry to the hospital. Once I got to the hospital it all happened so fast. I got checked in, my team came in to review our plans, and I got prepped for surgery. By 8:30 a.m. I was reading the last of my family’s texts full of love and support before getting wheeled back to surgery. I thought, ‘Here goes nothing.’ I took a deep breath, and … he was here. The room was suddenly very quiet. I started to tear. You never realize how much that cry means, until it’s not there. I asked my husband to go go see what they were doing. Was he alive? Was he stillborn? He came back to me and said, ‘Yes, he’s alive. But they’re saying I need to baptize him now.’ So staff photographed my husband baptizing him, and they quickly got him over to me. My husband and I stared lovingly and heartbroken knowing he would soon be leaving us.

Father holds newborn in selfie by wife's face who had c-section
Courtesy of Amanda Dillon
Woman lays in hospital bed beside her newborn and husband
Courtesy of Amanda Dillon

My team moved quick. Instead of wheeling me into recovery they made arrangements to get me into the biggest room in labor and delivery so that all of our family and children could come quickly say goodbye. Sawyer-Jack lived an hour before going back home. The nurse quietly called time of death because the tone of the room was so peaceful, it was almost like being home for a moment. We had our photographer come photograph him being loved on by everyone, and then our parents took our kids home to rest a bit. It was us and our boy. A wonderful team of nurses helped make many impressions of his hands and feet, and took foot prints for this beautiful memory box they pieced together for me. By that night I was able to get up and sit and hold my sweet angel.

Husband and wife sit in bed with their newborn and their three other kids
Courtesy of Amanda Dillon

The next day the funeral home came the next morning to get our son. And two days later, we  held a small, beautiful goodbye ceremony for him. The kids had colored him pictures, and we had pre arranged to have balloons and flowers around to make it as joyous for them as we could. Thanks to his presence our whole family was able to experience a deep love for life, his life had meaning. We used his passing to shed light on the Osteogenesis community and the many who are just like him. We asked that in lieu of flowers people donate towards this wonderful cause in our son’s memory. So many wonderful people made donations, sent food, sent flowers. It was so overwhelmingly sweet to see how many loved him, love us, and supported his journey. Looking at these beautifully captured memories of him every day around the house in all the photos we hung, reflecting back on all the worry and yet the joy we experienced throughout, it’s all a daily reminder that life is so precious and to really live in the moment. We would’ve never expected this to happen to us, but we really do embrace the experience. Just the need to lean on one another and be there for our other children along the way, it’s made us a strong solid family unit.

Husband stands outside holding their daughter beside his pregnant wife who holds bouquet of balloons with their two sons in front of them
Courtesy of Amanda Dillon

I’d say we had the opportunity to learn what it means to trust and to hope, and to love with every fiber of our being. We miss him, but we are blessed that our fourth child is an angel watching over us. And that thought gives us great peace. We came out on the other side stronger thanks to this wonderful journey we were taken on.”

This story was submitted to Love What Matters by Amanda Dillon from New York. Follow her on Instagram here. Submit your own story here, and subscribe to our free newsletter for our best stories.

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