Jim and Emily’s Story


My husband and I got married in September 2016 and welcomed our first child, our son, a day after our first wedding anniversary. We had an amazing first year of being parents. We always knew we wanted at least two children. After he turned one, we shortly found out we would be expecting again. December 18, 2018, to be exact. 

My husband was ecstatic, as he didn’t want a big age gap. After we got news of a thriving baby at our first ultrasound at 7 weeks 4 days, we told our immediate family. The pregnancy was going well, and I wasn’t suffering from any pregnancy ailments. 

I thought we were going to have another boy, because the pregnancy was feeling almost identical to the first. I was wrong. We soon found out we would be expecting a baby girl. My husband and I were overjoyed, since we were both secretly hoping for a girl. 


We were scheduled for some blood work for genetic testing and nuchal translucency screening. I was excited, because I didn’t get this “extra” ultrasound with my son. So, at 12 weeks 6 days, we went in for the ultrasound. She looked more like a baby at this point, and I was so in awe. 

The maternal fetal medicine doctor came in and said everything looked good, except the legs. They were measuring short. She said it could just be the positioning, so she asked that we come in again before the anatomy scan to have a better look. My husband and I joked that our son had pretty short legs compared to his long torso. We thought our baby girl would be the same. 


At 16 weeks 5 days, we returned for the ultrasound. We honestly didn’t expect that day, March 14, 2018, to forever be embedded in our heads as the worst day of our lives. 

We walked into the ultrasound room expecting everything to be completely normal. The tech was rather quick and she hardly spoke. I thought it was a little odd but figured she was having a bad day. She was finished and said the doctor would be in shortly to go over the scan. 

We still didn’t think anything was wrong, that is until after 15 minutes or so of waiting and not one but two doctors entered the room. They began their scan. “Femurs are definitely short and bowed.” “Arms too.” “Don’t mind us as we think out loud.” 

I remember taking a big gulp. “What does that mean?” The doctor said, “Well, we’re trying to figure it out. It’s definitely a skeletal dysplasia, but there are around 500 different types, so we are trying to figure it out.”

I remember zoning out and thinking to myself, okay, so she will be a little person, that’s fine. But that thought was torn out of my thoughts as soon as the doctor said, “Her ribcage is extremely small and misshaped. The heart is taking up too much of the chest cavity leaving little room for the lungs.” This is when the term “lethal” was mentioned. I couldn’t believe what I was hearing. 


The doctors suggested we meet with a geneticist and possibly think about doing an amniocentesis to get a proper diagnosis and see if this is hereditary. I’ll never forget the one doctor saying, “Well, the good news is that at least we know you can have a healthy pregnancy and baby,” referring to my son. I was holding back tears. 

The one doctor left, and the other doctor remained in the room. She apologized and gave us our options: continue on or terminate. She said they would not judge us whatsoever. She apologized again and left the room. My husband and I lost it. We couldn’t believe it. How could this happen to us when we did everything right. 

We met with the geneticist, and we agreed to do an amniocentesis that day. We wouldn’t get the results for several weeks. The waiting period was the worst. The only good thing was that we agreed on a name, Waverly Maeve. She needed a name, and it was the most beautiful name we could think of. 

After a couple weeks of waiting, we returned for the anatomy scan at 19 weeks 6 days. We were hoping and praying everything would be normal. But the findings just got worse, and everything about her bones were wrong. Her measurements were so far off from where they should be. It was confirmed that it was definitely lethal. She would either pass in my womb, be stillborn, or, at most, survive for a few minutes. We took the news fairly better at this appointment, because although we were hoping for a different outcome, this is what we were expecting. 


A few days after that ultrasound, we went to visit my OB and discuss our plans. I’ll never forget that visit. He told us he was sorry. He told us he suggested termination. He said he would do it that week, and it would be quick. It would be a surgical procedure, I would be put under, they would remove the baby, clean me out, and that would be it.

I was mortified when he said that. He then asked what we planned on doing. I told him I plan to continue the pregnancy and let things go naturally. As long as her heart is beating, I would protect her. He told us he didn’t see the purpose of that, as he said he saw her dying before 26 weeks. I couldn’t believe what was coming out of his mouth. We left that office as quickly as we could. 

Soon after I began making phone calls, doing Google searches, and learned of perinatal palliative care, I learned of Carrying To Term. I found so much support. I made a blog to express myself and cope with my feelings and to also keep friends and family updated. 


On April 17th, the geneticist called with the results from the amniocentesis. Osteogenesis imperfecta, suspected to be type 2, the most severe type. The only good news out of the phone call was that it appeared to be a random genetic mutation. 

Soon after learning the diagnosis, we switched hospitals and doctors. We are lucky to live near an amazing hospital, The Children’s Hospital of Philadelphia. From our first appointment to the last, we felt nothing but support from them. They used Waverly’s name at every appointment. They prepared us pretty well for the possibility of both outcomes (she survives or she dies shortly after birth). We made an amazing birth plan and scheduled our delivery date. 

On August 16, 2019, at 2:15pm, our beautiful daughter, Waverly Maeve, was born via C-section. 


I’ll never forget the silence I heard when the doctors shouted, “2:15! Happy Birthday!” I didn’t hear crying, I said to my husband. “Wait, she’s born?” He nodded his head, and he stood up to look over the blue curtain. I kept asking if she was breathing. I got a glimpse of her as they quickly whisked her over to get assessed and swaddled in a blanket. There was still so much silence. They brought her over to me and placed her on my chest. The priest was there and baptized her. During her baptism, she let out the sweetest cry. I got to hear her beautiful cry. 

After they finished closing me up, we were brought back to the room. We were beaming with smiles. She was absolutely perfect. Our son was the first to meet his baby sister. He was so excited. We had a photographer to capture all of those precious moments. Soon our immediate family came back to meet her. Everyone was so full of smiles. There was so much uncertainty of what would happen, and Waverly was amazing us all. 

My husband and I were able to bathe her, and I was able to breastfeed her twice. We got to look at her beautiful, big brownish/blue eyes as she looked around the room, and we got to brush her beautiful dark brown hair. We got to feel her hand grasp our fingers. We got to smell her, hear her cries and coos. We got to tell her how loved she is, and how proud everyone was. We got to hold her on our chest while she slept. I got to feel her squirm as she slept on me that night. She got to meet her grandparents, aunts, extended family, and friends. She got to be loved on by her big brother who was so in awe of her. 


When we noticed her time was coming to an end, my husband and I got into the bed and held her tight. We had our family come in and say their goodbyes. When they all left the room, my husband and I continued to tell her how loved she was and how proud we were. We told her it was okay to stop fighting, and that she could be at peace now. On August 17th at 7:51 pm, our 4 lb. 14 oz. and 14.25-inch-long baby girl went home to our Heavenly Father. Her heart stopped beating in my arms as my husband felt her heartbeat for the very last time. 

We got to spend the rest of our hospital stay with her in our room. She slept on my chest every night. We were able to do memory-making and take pictures. We were able to get her dressed and look at just how beautiful she was. She was and still is the most beautiful being I ever laid eyes on. On August 19th at 10:30 am, my husband and I held Waverly close while our nurse and chaplain prayed for her. We kissed her forehead a thousand more times before handing her off to the nurse. We quickly left the hospital and drove home. 

A World of Love

We are comforted in the fact that she is now at peace and is no longer in pain. She made so many people proud and touched so many lives. 

Her story will live on. 

She opened up a world of love that was never known before. We know we will be reunited with her again, and, for now, she is held so tightly in our hearts.