Part 3: A Troubling Diagnosis

congenital scoliosis

Less than a week after learning I was expecting, I came down with chronic bronchitis and sinusitis. I spent all of January and February sick and unable to really take anything to alleviate the symptoms because of the pregnancy. No way was I going to risk my baby, not after what I’d been through last year. I kept a close eye on my fever and only took the approved medicine if I absolutely had to.

I rarely left my bed except to use the bathroom. I had to cancel or refuse any speaking engagements. The only good thing about being so ill was that the sickness overshadowed the normal pregnancy nausea, and on the few days I felt a bit better, I was able to finish the remaining two chapters of the novel I had to turn in at the end of January. Only four of my six children lived at home then, and my seventeen-year-old and my fourteen-year-old suspected something, so in February I told them what was going on, and they helped out a lot.

After three months I went in to the midwives and heard the heartbeat. Only then did I tell the younger kids about the baby. I didn’t tell anyone else, and I asked my family to keep the baby a secret until the ultrasound said everything was all right. I didn’t want to make an announcement and then have to later report bad news. I did only one speaking engagement for the YW in my own ward, and fortunately I was blessed to make it through. One week I felt well enough to clean my office, a little at a time. Took me three days and my office is really tiny, so you can imagine how that went. I would actually never write there during my pregnancy as I was too ill to actually sit in the chair.

March and April I also spent mostly in bed. I was still fighting the cough, and the nausea became so terrible I only got up to pick up kids from school or to get them food. The couple times I went to the store, I ended up in bed suffering for the next two days. I rarely made it to church and then only part of the meetings. Sometime in April, I learned if I ate breakfast, got the kids off to school, went back to sleep until eleven, and then ate again, I sometimes had a hour or two where I wasn’t feeling like I was going to die. I started writing another book. It was horribly slow going, but it was something to distract me and make me feel like I was contributing at least something to the world.

I told my sister Mary and my mother about the baby shortly before the ultrasound but again asked them not to say anything until we had the results. Unfortunately, the ultrasound dropped a huge bomb: our daughter had a rare extra vertebra on the right side of her lower back (L2). It’s called hemivertebra and it is a common cause of congenital scoliosis. Though there seemed to be no sign of anything else wrong and it wasn’t severe, we would need more testing at the hospital (Maternal Fetal Medicine) to determine what that meant.

As we waited for the appointment, I learned that in nearly 89% of babies who have this condition also have some other severe spinal, cranial, or skeletal problem. Many die before the end of the pregnancy. All my fears seemed to be coming true. How could this happen after so much turmoil and stress when we were deciding whether or not to have another child? (See Part 2: The Decision)

My husband gave me a blessing, which promised a healthy baby. I kept repeating to myself the words I’d heard before the pregnancy: “Go forward in faith not in fear.”

Thankfully, after more tests, the specialist said my baby’s hemivertebra was isolated and that she didn’t seem to have any of the hundred syndromes that are usually present. This isolated hemivertebra happens in only 1 out of 4,000 babies. The hemivertebra wouldn’t affect her quality of life, though our daughter may or may not need minor surgery later. What relief!

I have to go back monthly to Maternal Fetal Medicine for additional ultrasounds to keep an eye on the vertebra and because of my age. Every time, it seems her spine is more and more normal. I have to confess that it has been nice having that wonder female doctor reassure me each time that nothing new has cropped up. Now also have to go weekly to the hospital for fetal stress tests (because of my age, not the hemivertebra) to make sure Lisbon is still getting what she needs.

So, I am surviving day to day, but I can do that. We’re having a baby!

Stay tuned for Part 4 coming soon.

Related posts:
Part 1: The Secret is Out

Part 2: The Decision
Part 3: A Troubling Diagnosis (this post)
Part 4: Preparing for Lisbon

More related posts:
Update on Baby Lisbon
Update #2 on Baby Lisbon

5 Responses to “Part 3: A Troubling Diagnosis”

  1. Rachel Ann Nunes

    Hi Amber! Lisbon just turned eight and we have had ZERO problems due to her hemivertebra (also called congenital scoliosis). She is healthy and strong and active. We take her every three years to a specialist. She has remained at a 20% curve. You can see for yourself how healthy she is on my pen name blog, where I do most of my publishing now. There may be problems still awaiting us in the future, but I am hopeful she will remain healthy. I hope your baby has a similar outcome. Lots of love and prayers coming your way.

  2. Amber Hoops

    Hi Rachel, thank you so much for sharing your story. I am due mid November of this year and our daughter also has an hemivertebrea which we now know is also isolated. We went though the fear the guilt, checking the internet to see all the bad things that could happen and affect her. I came across your post and it put a smile on my face. I know it is years later so I hope this finds you well. Curious to know how your little Lision is doing and want challenges if any have come. They are and will be the toughest I am sure
    Thank you so so much Amber

  3. Anonymous

    Sorry, I meant vertebrae, not rib.

  4. Rachel Ann Nunes

    Thanks, Sherrie. Things are looking up!

  5. Sherrie

    You have been through a lot. I'm glad that things are now looking up. I hope you are feeling better though. Hang in there!


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