GROWING OUR FAMILY
After three months of trying, my husband and I were ecstatic to see a positive pregnancy test in July of 2018. We had our first sonogram at nine weeks, and we were relieved to hear a heartbeat and see a healthy baby. My pregnancy started with fatigue and all-day sickness, but thankfully, that ended at the beginning of my second trimester. Besides that, my pregnancy was a breeze. I never had any swelling. I had lots of energy, and I slept great.
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 for our baby girl: Nora Lee.
LEARNING THE DIAGNOSIS
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, her ribs were also very tiny. The specialist then told us that he thought Nora had a type of skeletal dysplasia. We were stunned by the news.
He told us that her diagnosis was fatal. 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.
Unfortunately, the second specialist confirmed the diagnosis. Our daughter had a lethal form of skeletal dysplasia.
CHOOSING TO CONTINUE THE PREGNANCY
Both specialists told us that we could abort the baby, and it would be a completely understandable decision. We were also told that we had the option to undergo an amniocentesis, in an attempt to get a specific diagnosis. We quickly rejected both of those ideas. Instead, we decided to wait, in the hope that the farther along we got, the more definite answers we could get.
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 after 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 that her diagnosis had not changed. We learned that Nora’s tiny ribs meant that her lungs were not developing as they should.
PREPARING FOR HER BIRTH
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. We were told to expect that she would be purple and that she would not be able to breathe on her own. We were told that she would make no sound. We were told that she would pass away quickly and peacefully.
After this conversation, we went back home and assembled our 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.
Every week, Nora passed her tests with flying colors. We knew she was a fighter, so we decided to keep her in a little longer. We scheduled a C-section for week 37.
MEETING OUR DAUGHTER
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. Shortly after nine in the morning, the surgery began.
Nora Lee was born at 9:49am, and she weighed 5.2 pounds, measuring 15.25 inches. I was surprised to hear Nora’s cry as the doctors 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. Unfortunately, our neonatologist confirmed the skeletal dysplasia diagnosis. My husband and I got to gaze into her eyes and hear her few cries and coos. These are memories that will never be forgotten.
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.
FINDING COMFORT IN OUR GRIEF
We are comforted in the fact that Nora is now healed in the presence of our Father. 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 (OI), type II, the most severe and lethal form of OI. OI is characterized by short and fragile bones. While doctors reviewed her x-rays, they noticed the healing of multiple bones. This means while in the womb, the majority of Nora’s bones had been fractured at some point.
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, at times, 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.