Christi’s Story: “What if your baby lives?”

October 20, 2023

Many of our stories come from our Verity’s Village online community, but the presence of the grander community affected by a prenatal diagnosis is larger than our online community. Each of us are in cities with others who have been given a diagnosis or are caring for a child who received a diagnosis. In my homeschool community, I am privileged to know one such family who has run this race. While pregnant, Christi’s family found out that their baby had Skeletal Dysplasia (specifically Osteogenesis Imperfecta type 3, also known as Brittle Bone Disease), and our homeschool community was able to love her and her family through their diagnosis, delivery, and caring for her dear EmmyLou.

– Brooke Shambley

Christi’s Story: “What if your baby lives?”

On July 2017 I went in for a routine 20 week prenatal check and sonogram. This was my fourth pregnancy so I knew the routine, but I knew something was wrong when the sonographer said, “The doctor will be with you soon.” Ugh . . . My mind was scrambling because my first three pregnancies were perfect and had no complications at all. “Maybe the sonographer is being extra [careful] or just needs to double check herself?” “I am sure she didn’t see anything. It is nothing. Everything will be alright.” 

Unfortunately I was wrong. My wonderful doctor came in and told me that the bones of my baby were not measuring the length that they should be. He also said that I would need to see a specialist to get more information. I asked him what it could be and if I should be concerned. With an honest heart he told me that he did not know what it was and it could be that my baby may have a form of dwarfism, but I would need to see a specialist for the remainder of my pregnancy. I spent the next couple of weeks waiting for my specialist appointment, but my heart was not troubled. I knew this pregnancy would be far different than my other three, but I was ready for any of the challenges that would come. 

August 16, 2017 my husband and I made the hour trip to see a specialist doctor and had no idea what the day was going to bring. The appointment began with a sonogram, and then the doctor came in. The doctor did not waste any time telling us what she saw on the sonogram and what the future held for us. “Your baby’s bones are not developing the way a normal baby should. Her limbs are 8 weeks behind the growth chart of a baby, and her rib cage is forming a bell shape. The diagnosis is ‘Skeletal Dysplasia’ and there are over 300 types. This all leads to the high possibility of a fatal pregnancy. But if your baby does survive birth she may not live for long.” 

I was in shock. My husband was in shock. I think after a minute or two of silence she asked if we had any questions. To be honest I don’t remember very much else of the appointment or of the day. What I do remember is when we had to walk out into the huge waiting room in front of all the people. Once the shock wore off I could not stop sobbing with snot running down my nose. I was humiliated walking through that office. I remember running into the bathroom stall and screaming, “NO! NO! NO! What the hell is going on?!?!?!?! Why are you doing this God??? Why????” I remember the hour-long drive home where I sat in the fetal position and sobbed the entire way home in silence because my favorite Christian music station made me so, so, so angry. Needless to say August 16, 2017 was the worst day of my life. 

For the remainder of my pregnancy my husband had to go with me to every appointment because my anxiousness went into full gear on those appointment days. I would hear the wheels of my doctor’s cart coming, and the tears would start streaming down. There are not many appointments that I remember where the doctor did not tell us, “I am sorry, but it still looks lethal.” On one occasion I got the nerve to say, “Why? Why do you say that??? I feel my baby moving in my belly, why do you say she will not live???” In response the doctor said, “Basically your daughter’s bones are not growing and her lungs will outgrow her rib cage. When she is born she will suffocate to death.” I was not ready to hear that. After that visit I spent the rest of the pregnancy planning my daughter’s birth and her death. I lost all hope. I lost all joy. I lost all peace. 

Twenty-four days before the C-section of our baby girl I met a mom on Facebook who shared her pregnancy story. Her story was my story. Her heartbreak was my heartbreak. Her anxiety was my anxiety. But her baby was alive. Her baby was six months old and he was beautiful. Her son was born with Osteogenesis Imperfecta Type 3, and he was perfect. December 4, 2017 was the day I heard the still small voice of God say, “What if your baby lives?” On December 28, 2017 our baby girl was born, and she breathed, and she screamed, and she lived. Hope was restored, but it was only a glimmer because the pediatrician doctor had never cared for a child like our daughter and he still believed it was only a matter of time. I did not know what to do and I felt at the mercy of the medical staff. My new friend on Facebook quickly reminded me that she believed our girl would live, and I would have to fight for her. Our baby girl lived in the NICU for 50 days. Our baby girl continues to live 5 ½ years later with Osteogenesis Imperfecta type 3, and she is absolutely perfect.

– Christi B. – EmmyLou’s Mother

Heart Divider

Do you have your own diagnosis that you are experiencing? Do you need support? Join our community here.

Follow Verity’s Village on Facebook and Instagram for more information and education on the various diagnoses parents face and their stories of hope.