Mom to Baby Christian
Born on January 27, 2012
Died on January 24, 2012
Mooresville, North Carolina
It’s hard to even believe what has happened in the past few weeks, but I’ve been told it could be therapeutic to share my story. I know how much it’s helped me reading other people’s stories, so here goes.
It was a typical early Tuesday morning in September of 2011; my husband kissed me goodbye, as he travels out-of-state on a weekly basis for work. We had been trying to conceive for a few months with no luck. Every test I took came back negative and I was getting frustrated. That morning, after he left, I was expecting my period and I thought to myself, I’m going to take the last test in the box and if it is negative, I am done stressing. I realized that when it’s meant to be, it will be. A few minutes later the test read positive and I was over joyed. I didn’t want to tell my husband over the phone so I decided to wait until Thursday night when he got home. My two year old, Claire, and I would plan a special way to tell him.
I remember walking around that day with a permanent smile on my face. Claire and I went and got a “big sister” shirt for her to wear, and we waited until Thursday. When Claire ran out with the shirt on I videotaped my husband’s reaction, and I thought it was so wonderful that I could save that reaction for when this new baby grew up and could watch how excited his or her father was at the thought of adding to our already perfect family.
A few weeks passed and the dreaded morning sickness made its arrival. I endured around-the-clock nausea for the next three and a half months. It was just coming to an end right before our exciting 20 week ultrasound, and I felt so proud of myself that I had gotten through what is, for me, the worst part of being pregnant.
So here we were, just the three of us, walking into the ultrasound room, so excited to see our new little addition and to show Claire her brother or sister. We wanted to keep the gender of the baby a secret and the techs promised to do so. Halfway through the ultrasound, which we thought was going great, one of the techs left the room and walked back in with a doctor. Immediately I knew something wasn’t right. She sat down and told us that everything looked great except the baby’s long bones were measuring about four weeks behind. I instantly lost it. I started crying and my husband asked her what that even meant. She said she honestly didn’t know, and we were referred to a high risk specialist. This appointment was on a Friday and we couldn’t get an appointment with the high risk doctor until Monday. First lesson we learned was never to schedule an ultrasound on a Friday. That weekend was awful for us. The second lesson we learned was that Google could be a nightmare when you get news regarding the health of your baby. We tortured ourselves with terms such as dwarfism, Down syndrome, etc.
Monday finally arrived and we headed to our appointment with the hope that the OB-GYN and the ultrasound techs were wrong. The doctor spent a long time looking at the ultrasound and finally told us with almost 100 percent certainty that the baby would have a form of Skeletal Displasia. There are over 200 types of Skeletal Displasias, some even lethal. The doctor thought it looked like the non-lethal Achondroplasia, the most common type of dwarfism. Our worst nightmare was coming true. I was a mess and couldn’t even speak. My husband became my rock and asked questions, took notes and tried to calm me down. I just couldn’t imagine that the baby I had visualized to be so perfect was now being diagnosed with Skeletal Displasia.
A genetic counselor gave us the option of having an amnio done in order to narrow down what type of Displasia and whether or not it was a lethal one. We agreed and the next day we had the amnio done. As the doctor removed the amnio needle from my stomach the baby’s heart rate dropped significantly. Those few minutes felt like an eternity as the doctor monitored my baby’s heart beat. Finally we all heard it return to normal and the doctor himself was a bit shocked that it had dropped so low. We were presented with our options. We could wait four weeks for the amnio and continue the pregnancy regardless of the results or we could terminate the pregnancy either before or after the results of the amnio. I felt such defeat. What had I done wrong? What lesson was God trying to teach me? Typing this, I am still asking myself these questions. The doctors have all assured me that there is nothing I did or could have done to change this. A “new mutation” of a gene caused this and I had to accept that.
That night I didn’t feel the baby kick. The next morning I still hadn’t felt the normal movements of the baby and we went to my OB-GYN just to be sure. On the drive there I just knew in my heart that God had already taken this baby to heaven. As the ultrasound proved, I was right. We learned it was a little boy and even though I am still trying to accept that all of this really did happen and I’m not going to wake up from the worst nightmare of my life, I am trying to look at the positive side of things. I now have a beautiful little boy in heaven, whom we have named Christian, watching and protecting us every day.
I was induced the next day and delivered Christian in the early morning hours. Holding him was so bittersweet. In my eyes he was perfect. So small, yet so developed. He was the cutest thing I had ever seen. How could I not know something was wrong these past four and half months?! A radiologist and a pediatric geneticist took x-rays of Christian, and they believe that the Skeletal Displasia Christian had was Thanatophoric Displasia, the most common lethal Skeletal Displasia. Christian wouldn’t have been able to survive this. Even though the doctor isn’t really sure how it happened, Christian died because of complications with the amnio. That is what it says on his death certificate. However, my husband and I have put our complete faith in the fact that Christian wasn’t healthy and God decided to take him early. We are coping, some days better than others. My sweet Claire is the best medicine. She gets me through the days I wake up and feel as though I can’t breathe. Our family will always be one beautiful smile short, but we know he’s always with us and he will forever be a part of who I am. I love you my sweet little boy.
You can contact Megan at firstname.lastname@example.org.