GROWING OUR FAMILY
My husband Michael and I have been married for eight wonderful years. Michael owns his own construction company, and I am a stay-at-home, homeschooling mom to three of our kids, ages 2, 5, and 7.
At the tail end of winter 2017, I found out that I was pregnant with our fourth child. There wasn’t anything particular to indicate I was pregnant. Having been through it three times before, I just had a feeling, and sure enough, the test said yes! The main difference between this pregnancy and my other three was that I was much sicker early on, and that stood out to me.
Besides the sickness, the pregnancy progressed normally, and it wasn’t until the anatomy scan that we learned anything was wrong.
AN UNEXPECTED DIAGNOSIS
We went in for our routine anatomy scan at the end of May 2018. During the scan, we noticed that the sonographer was making peculiar faces. I had heard the heartbeat, so I didn’t know why she suddenly looked concerned, got up, and asked to be excused. She came back shortly with a doctor.
The doctor had looked at the scans and was here to deliver devastating news. She said, “I’m sorry, but it’s not good news. Your son looks like he has some form of skeletal dysplasia. Based on the measurements, I also think it’s very likely that it will be a lethal form.”
In that moment, everything we knew as parents who had delivered three perfectly healthy babies seemed to disappear. But when they asked us when we would like to terminate our beautiful baby boy, who had a strong heartbeat, we immediately knew what we would do as his parents. We instantly said no to termination, saying, “You cannot guarantee that he will die, and even if you could, we are his parents. We need to do what is best for him, because right now, he is still here.
UNDERGOING TESTING TO CONFIRM THE DIAGNOSIS
Immediately following the anatomy scan, we had an amniocentesis, and we met with a geneticist to go over our family tree. We then spent weeks getting more scans, blood tests, and an MRI.
Throughout all the testing, we knew termination was never an option. There were still so many “maybes” and “could be’s,” and we couldn’t bring ourselves to even consider termination when he could be born with minimal complications. He could just have dwarfism and lead a perfectly healthy life. We decided it was our responsibility to do the best we could as his parents for as long as we could. It was not always easy, but we had the amazing support of each other, our family, friends, and medical team.
We eventually learned that our son did, in fact, have a lethal form of skeletal dysplasia, possibly a rare form of Osteogenesis Imperfecta. Ultimately, the amniocentesis confirmed a diagnosis of osteogenesis imperfecta, but the exact type was still unknown.
After the testing, we were advised that our son would probably die in utero before 30 weeks. The only thing we could do was check his progress through a growth scan every few weeks. We were offered an array of testing, but after hearing the same answer over and over again, we decide to quit testing and just bond with our growing baby boy.
We continued with the growth scans, but the process was mentally draining because there would be times when growth had slowed or stalled, and it worried us. Up until about 3 weeks before delivery, the doctors didn’t think our son would even be over 2 pounds at birth.
CONTINUING THE PREGNANCY AND MAKING MEMORIES
30 weeks gestation passed, and he was still alive with a strong heartbeat. Not knowing how much time we would have or if he would even make it to term, we made the most of every day. We studied his condition and the many forms of it on our own. We spent time meeting with hospital staff, clergy, and a funeral home to make the necessary preparations to be sure everything was in place.
On the day we learned of the diagnosis, we told our immediate family members because we are a tight-knit bunch. So, as we prepared for our son’s birth, our parents even had lists of things to do like alert close family and friends, call the funeral home, and call the photographer to come to the hospital.
We did a bright, colorful, rainbow maternity shoot to memorialize the pregnancy and give our kids a bright, beautiful memory of their brother. We prayed a lot. We cried. We hoped. We invested time into researching the best way to tell our children. We made lists and plans for pretty much every scenario.
Not knowing the full diagnosis, we prepared for the worst and hoped for the best.
MEETING OUR SON
I was scheduled for a repeat C-section on October 24, 2018. In the early morning hours of October 20, 2018, my water broke, and we headed to the hospital. My doctor was there and quickly assembled our entire dream team of every specialist who needed to be there.
Our families came to help with our kids, and then I was taken back into surgery. The surgery itself was average, but not hearing my baby cry was honestly abnormal, and it hit an emotional chord.
Sawyer-Jack Joseph Dillon was born at 9:12 am, weighing 3lbs, 8oz. He was 13 ½ inches long.
He was tiny and fragile. Some of his limbs were bent, and his bones were soft. Just like the doctors had said. It was confirmed that he did have osteogenesis imperfecta, type II. At one point during our testing, the doctors thought he might have microcephaly, but he didn’t. His head actually measured the most on target. He was beautiful with the most adorable chubby little cheeks.
We cherished every moment of the hour we had with him. Our medical care team informed us that his heart rate was declining, and that our plan for comfort care was in place. My husband baptized him, and then the nurses wrapped him up. My husband brought him to me, and we huddled close as they finished my surgery.
SPENDING TIME AS A FAMILY
Our medical team knew how precious and important it was to us for our children to meet their brother, so instead of waiting for recovery, they wheeled me into a labor room. Our families were able to come in, and we were all together during his last moments.
We had a photographer who took pictures of us as a family. We have gorgeous black and white close-up photos of him being snuggled and loved on by his siblings, just like he’s part of the gang.
We have photos of everyone holding him. We took group photos, and we even have candid and emotional photos. These photos mean the world to us as they are a part of his story. Seeing the four of our children together, if only for a moment, has helped with our healing.
When I had the nurse come in and do a check, she quietly called the time of death. I didn’t want anyone to know that he had passed. The tone in the room was so peaceful that it was almost like being at home for a minute. Eventually, everyone filtered out, leaving us to spend some time with our son.
The nurses helped me make impressions of his hands and feet. They built a beautiful box with his crib card, bracelet, and other keepsake items. They also convinced me to have him stay in the room with me for the night. They were right, having him there let us feel closer to him. I think it made letting go a little easier since he wasn’t just ripped from me.
We had this beautiful time together, and then the funeral home came the next morning. Having them come to us to retrieve him gave me peace of mind that his body was safe. Just a few days later, we held a small, beautiful funeral for him. We ended that day with our kids releasing blue balloons up to the sky to celebrate his life.
Throughout the pregnancy, everyone supported us. We announced the news about our son on social media with a sweet message to our friends. We wanted people to know but also to understand and respect our need for privacy. We were then able to really focus on us, our family, and keeping things relatively normal for our kids. Luckily, our kids being younger helped us keep busy and distracted.
Our obstetrician, hospital staff, and every single person we came in contact with knew how important this time and experience was for us. I think that’s what helped make our birth so peaceful and beautiful. Everyone knew and supported our wishes to bring him into peace and love and then to let him go feeling that love. We wanted, even if just for a moment, for him to feel a part of the family.
Our preparations and memory-making helped us prepare our little ones. They knew that, on the day of delivery, it was possible that their brother wouldn’t be coming home. Their knowledge helped them really embrace the time we did have with him.
The Osteogenesis Imperfecta Foundation was so helpful, too. They provided us with a lot of hope and support when we felt at the end of our rope. Their stories, recommendations, and supportive nature really helped us to learn more about the diagnosis and not feel so alone.
LESSONS OUR SON TAUGHT US
What our son had was a sporadic fluke. It wasn’t genetic. We had no idea what osteogenesis imperfecta even was. My advice to other parents is to always ask questions and educate themselves. The hardest pill to swallow in the beginning was what the diagnosis was and whether or not it was our fault. I’m sure a lot of parents can relate to feeling that way. This happened beyond our control. It is never a fault, and it didn’t make him any less precious to us. No matter what, we wouldn’t trade it. All the stress, exhaustion, and sadness were worth it to meet and hold our son. He will always be our son.
I encourage other parents to hold on, even when it seems like the weight of the world is on their shoulders. Just breathe. Ask questions, and never be afraid to make sure your birth is exactly how you want to remember it. Every precious moment and detail is important. No detail is too small because even the smallest ones will bring you joyful memories and peace.
Parents, don’t stop talking and don’t shut down. Talk to your spouse, your doctor, a friend, or anyone close to help you get through this. Anything you feel won’t be wrong. You’re entitled to feel the way you feel. Letting it all out helped us stay level-headed and feel at peace. We never held anything in. We asked all the questions possible. We never lost faith or hope, even up to the very last day. You are in the driver’s seat, so make your memories all that you wish them to be. Don’t underestimate the power of a memory.
This experience has made us better people. We sacrificed our emotions and time to put this little person first. We learned true, selfless love. The beauty in the suffering was what brought us together and made us closer as a family. Sawyer-Jack taught us faith, patience, and hope in the little bit of time he had here. Now a piece of our hearts is in heaven with our beautiful angel baby.