How compassionate professionals helped me before and after my baby’s death

It’s the season when it’s customary to spend a little extra time thinking about the things we’re grateful for. For me, near the top of the list are the medical professionals in my life who have supported me in the good times and the very difficult times, specifically those who helped carry me through my pregnancy with my second son, Daniel, who was diagnosed with lethal abnormalities mid-pregnancy.

I still have to pause and take a deep breath when I start going through my “Daniel things.” Feelings rush back as I look through sympathy cards from loved ones, ceramic molds of tiny hands and feet, or a little lock of dark brown hair. It’s an emotional punch in the gut when I come across his death certificate while I’m looking for one of my other children’s birth certificates.

The events leading up to Daniel’s birth and death happened almost 12 years ago, but some moments are so vivid that I think it will always feel like they happened last week.

One such event was my mid-pregnancy anatomy scan. In anticipation of finding out if we were having a boy or a girl, my husband, David, and my older son, Charlie, came along for the ultrasound. Charlie was 4 years old at the time and excited to have a sibling. David and I were also eager for Charlie to have a sibling. After years of infertility before both pregnancies, we were happy to finally welcome another child.

As our sonographer, Cindy, began the exam, I suspected almost immediately that she was seeing something concerning. I had come to know Cindy a little through the infertility years and the first half of my pregnancy with Daniel, and she was always very friendly and cheerful. But this time, I noticed a change in her mood within seconds of beginning the ultrasound.

Cindy decided she would get the gender question out of the way at the beginning. I still remember Charlie’s sweet little voice asking, “Is it a brother?”

It was a brother. We had a few minutes to bask in the excitement of having another baby boy while Cindy took the remaining measurements, but I couldn’t shake the feeling that we were about to get unexpected news. I watched the monitor display numbers like 13 and 15, later to realize they should have been closer to 20, indicating proper growth according to the weeks of gestation. I noticed Daniel’s forehead looked unusual, but I assumed it was because sometimes ultrasound images look strange.

When the ultrasound concluded, Cindy set her tools down and paused.

“I’ve got to be honest, you guys. I have some concerns,” she said, in what was probably a break from protocol. She told us that Daniel’s bones were very short, and he appeared to have some type of dwarfism.

This was surprising information, but I wasn’t alarmed. Not yet. Cindy led us to an exam room to wait to talk to my doctor, Dr. Hughes. I remember anxiously waiting to hear more and feeling so much love for my baby boy. I knew we would have to adjust some things about our lives to accommodate his needs, but I was happily willing to do that.

Dr. Hughes explained that there were hundreds of types of dwarfism and that we’d need to follow up with a maternal-fetal specialist at the regional hospital to learn what type of dwarfism Daniel had. Dr. Hughes said that a handful of types of dwarfism were lethal.

Still, I wasn’t too worried. Out of hundreds of types of dwarfism, what were the chances our son would have one of the bad ones?

That night, I remember standing alone in my kitchen. We had lived there for years, but suddenly everything around me looked and felt different and unfamiliar. Somehow I knew that life had just changed in a big way. Later, I spent some time searching the internet to learn everything I could about dwarfism. Some types were familiar to me, like achondroplasia and osteogenesis imperfecta. Some I was learning about for the first time. One type — thanatophoric dysplasia — was off-limits. “Thanatophoric” means “death-bearing.” I wasn’t going to let my mind go there.

My doctor had called in a favor to get me an appointment the very next day with the maternal-fetal specialist. We left Charlie with friends this time, and David and I went to the appointment, eager to learn more about our baby boy.

During the follow-up scan, I heard the phrase “cloverleaf skull,” and my heart sank. In my internet research the night before, I learned that a cloverleaf skull was indicative of thanatophoric dysplasia. A few minutes later, in a room that existed just for conversations like this one, our specialist, Dr. Andres, explained that all signs pointed to a lethal diagnosis — thanatophoric dysplasia, type 2. We learned that because the baby’s long bones (arms, legs and ribs) were short, his chest cavity was very small. His heart would grow normally, taking up most of the chest cavity and leaving almost no room for lungs to eventually develop.

We learned that as long as I was pregnant and doing the breathing for him, he was OK, but that as soon as he had to breathe on his own, his small, paper-thin lungs would be unlikely to be up to the task.

This was my first experience with medical news this bad, and the first time I realized so personally that medical professionals like Cindy, Dr. Hughes and Dr. Andres must have to bear such heavy burdens sometimes as they deliver bad news and care for patients through such difficult things. They are there for the highest of highs when new healthy babies are born and the lowest of lows when dreams come crashing down.

Over the next few months after Daniel’s diagnosis, I remember feeling him wiggle and kick just like any other baby. I remember looking down and my growing belly, crying and begging, “Baby, please be OK.”

As I held my precious boy during his short life, Suzy came to me and held her face close to mine. She looked into my eyes and told me that I was a special mother.

Going to the rest of my prenatal appointments was a challenge. Sitting in a busy waiting room full of other expectant mothers required a different kind of courage than I had ever needed to tap into before. Dr. Hughes, who had been by our side through a lengthy infertility experience, was devastated with us that our long-awaited baby boy wasn’t going to survive. I remember running into Cindy in the hallway after one of my appointments. She immediately wrapped her arms around me in the tightest hug and said, “I’ve been thinking about you so much.” She helped me find an alternate route out of the office so I wouldn’t have to walk through the waiting room with red eyes and tear-stained cheeks.

I was touched by the medical professionals who cared so deeply for my family and me during a difficult time. We had a genetic counselor who tenderly helped us understand Daniel’s condition and a labor and delivery nurse from the hospital, Suzy, who made house calls to counsel with us and guide us through the remainder of the pregnancy. Suzy coordinated a meeting with all the doctors who would be involved in Daniel’s delivery: the surgeon, the anesthesiologist and the neonatologist. Together, we were able to make a plan for his delivery that we could feel good about, and Suzy promised she would be there.

Daniel was born the morning of May 10, 2011, at 37 weeks gestation. His records say he lived for 32 minutes. As I held my precious boy during his short life, Suzy came to me and held her face close to mine. She looked into my eyes and told me that I was a special mother.

Because Daniel was born via C-section, I had to spend a few days in the hospital. The staff was careful to find me a room far enough away from the other patients so I wouldn’t be able to hear the cries of healthy newborns. A few days later, as we prepared to leave the hospital without our baby, our maternity unit nurses delivered a card expressing tender feelings of sympathy. I kept that card with other mementos from Daniel’s birth, and it still means a lot to me.

During my stay, a hospital social worker, Amelia, checked in with me every day to make sure I was doing okay, mentally and emotionally. We kept in touch, and she has become a dear friend.

I’ll never forget the care and kindness shown to me, my baby, and my family during those months after Daniel’s diagnosis, up to and after his birth and death. I’ll be forever grateful for medical professionals who were willing to go beyond what their jobs required to help carry us through that time.

Daniel would be 11 years old now. He has a little brother named Sammy, a little sister named Ada, and another baby brother, Aaron, whom we unfortunately lost to miscarriage at 17 weeks, with no explanation as to why he didn’t make it. Again, we were treated with the utmost tenderness and kindness by our medical professionals in our time of sadness.

Infant loss and pregnancy loss are painful at any stage of development. Good doctors, nurses, and others in positions to care for bereaved parents have such power to help make a difficult situation into something that can become a special and sacred part of a life story, and I’m grateful to those who did that for me.