Beth’s Story
In July of 2018, my husband and I found out we were pregnant with our first child. We fell in love with our baby pretty quickly and had a hard time containing our excitement. Our first sonogram was at nine weeks, and we thought it was the cutest gummy bear shaped baby we had ever seen. We were relieved to hear a heartbeat and see a healthy baby.
Our anatomy scan was scheduled for eighteen weeks, and we knew that we wanted to know the gender right away. In the middle of the scan, we learned that our sweet baby was a girl. We already had a name picked out in memory of my grandpa who passed away at the beginning of my pregnancy. Our baby girl’s name is Nora Lee. Nora means honor and light.
We figured since Nora had a strong heartbeat and properly working organs that she was healthy. We had no idea how quickly our world would change as we waited in the room to see the doctor after our scan. As soon as our doctor walked in, we knew something was wrong. She explained to us that Nora’s arms and legs were not growing properly, and that her limbs were measuring far behind in length. Our doctor told us that the lack of bone growth could be caused by a few different things, so she sent us to a specialist to get more answers.
We traveled to a Maternal Fetal Medicine specialist where we did another sonogram. During that scan, they noticed that, in addition to her arms and legs being short, her ribs were also very tiny. The specialist then told us that he thought Nora had a type of skeletal dysplasia. This was one of the outcomes we were expecting. We told each other, “We can handle having a little daughter.”
Then, he told us that her diagnosis was fatal and incurable. He gave her a 15% chance of survival after birth, if she didn’t pass away before then. We were left speechless. He recommended that we get a second opinion, and with hope that he had made a wrong diagnosis, we traveled further to see another specialist.
The second specialist confirmed the diagnosis. Our daughter had a lethal form of skeletal dysplasia. Both specialists told us that we could abort the baby, and it would be a completely understandable decision. We quickly rejected both of their suggestions. We believed that our daughter’s life was valuable no matter how long she lived, and we were not going to do anything to harm that life.
We quickly learned, that as parents, our job is to protect and love our daughter, and we knew we were going to fight for her and her precious life. We were hopeful. We were hopeful that Nora would survive. Alongside many friends, family members, and strangers, we prayed for a miracle. We prayed that Nora would be healed. A verse that the Lord gave us shortly before we learned her diagnosis was Psalm 145:9. It says, “The LORD is good to all, and His mercy is over all that He has made.” We clung to the promise that, no matter the outcome, the Lord is good, and His mercy is over Nora.
A few months later, we went back to the first specialist to see if there were any changes or growth. Unfortunately, the measurements showed that Nora’s bones were still very tiny, and her chances of survival were getting smaller. We learned that Nora’s tiny ribs meant that her lungs were not developing as they should.
At this appointment, we began to discuss the details of what her birth would be like. We were told that Nora was expected to live for only a few minutes or hours after her birth, that her skin would likely be purple, and that she would make no sound because she wouldn’t be able to breathe on her own. We were also told that she would pass away quickly, with no pain.
After the consultation, we went back home and assembled our wonderful medical team in preparation for her birth. We decided that our main goal was to spend as much time with Nora alive, once she was born. Our local doctor and specialists discussed our case, and they came to the conclusion that, if we wanted to see Nora alive, we would have to deliver her early. We were told that if we continued the pregnancy to full term, there was a very high chance of her being stillborn.
We did not feel comfortable with the idea of delivering her too early, so we ended up seeing our doctor once a week, every week, from weeks 32 to 36 of my pregnancy. Each week, they did a fetal biophysical profile, which includes heart rate monitoring and an ultrasound to check the baby’s breathing, movements, and amniotic fluid level. We enjoyed seeing her so often and loved getting to know her personality. She was always so happy and lively.
Every week, Nora passed her tests with flying colors. We knew she was a fighter, so we decided to wait a little longer. We scheduled a C-section for week 37.
On February 22, 2019, we woke up early after a night of very little sleep, and we headed to the hospital to meet our daughter. Still hopeful, we waited patiently to go back to the operating room. After a few delays it was finally time.
Nora Lee was born at 9:49am. She weighed 5.2 pounds and measured at 15.25 inches. I was surprised to hear Nora’s cry as the doctors quickly cleaned her up. She was then immediately put on my chest for skin-to-skin time.
She was so perfect, and she had so much life in her. Her skin color seemed healthy. She was fighting so hard, and I thought she was going to survive. Sadly, our neonatologist confirmed the skeletal dysplasia diagnosis.
My husband and I got to gaze into her beautiful eyes and hear her few cries and coos. All we could do was tell her how much we loved her and kiss her. These memories will be ingrained on my heart forever. As I was wheeled into the recovery room, Nora was placed into my arms, and we watched her peacefully leave this earth at 10:55am.
We are comforted by the fact that Nora is now healed and with her Creator. She is no longer in discomfort or pain. A month after Nora’s birth and death, we got results back from further testing they did in the hospital. We learned that Nora had Osteogenesis Imperfecta, type II, the most severe and lethal form. This disease is more commonly known as Brittle Bone Disease, and is characterized by short and fragile bones.
Nora’s short life has been used for so much good. Reconciliation has been brought to our family. Unbelieving hearts have been softened, and we know that there are so many stories of people touched by Nora’s life that we aren’t even aware of yet. We are so proud to be her parents and to be able to share her story. While we still do not understand why, we know and cling to the promise that God is good, and He was merciful to our sweet daughter.
- Beth Fox
Hope Mom to Nora Lee
Beth is married to Roman. Their daughter, Nora, lived a short but impactful life. Beth’s blog can be found here: https://ourlittleplum.wordpress.com
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