Diagnosis Day: December 20, 2019

April 14, 2026

Disclosure: This post contains affiliate links. If you click and make a purchase, I may earn a small commission at no extra cost to you.

Our Spina Bifida Story from the 20-Week Ultrasound

If you’ve ever received life-changing news in a doctor’s office, you understand how one day can split your story into “before” and “after.” This is ours.

Hello friends, my goal in writing this is to give you hope.

Why I’m Sharing Our Diagnosis Day

My goal of writing this post is to give you hope. I would like to tell you about our experience with diagnosis. Diagnosis day is a day for many families where their lives were forever changed; if you have ever received a diagnosis, I’m sure you can relate. Regardless of the type of diagnosis, it is life changing; whether it be a cancer diagnosis, a mental health diagnosis, a chronic illness, lifetime disease, or in our case Spina Bifida diagnosis with the myriads of diagnoses that come with it. A diagnosis changes you. It changes your family. It changes your friends. Everyone near and dear to your heart is forever changed.

Before the Ultrasound: When Everything Felt Normal

My pregnancy with Ann Bailey was easy and going well. She was conceived a couple of weeks after we started “trying”. We had blood work done, everything looked good, I found out I was having a girl – we were ecstatic! We had two amazing boys, and we were getting a girl for our caboose. Things could not have been any better. We were in Chicago at the time and were planning a move to Virginia (Washington, D.C.) for my husband’s job in January. Everything was just going exactly as planned. It was great!

The 20-Week Anatomy Scan (December 20, 2019)

My 20-week ultrasound scheduled for Friday, December the 20, 2019. Of course, was right before Christmas, so as you can imagine Tyler’s office was sparse; those that could take PTO did and most of the others were on trips. Because of this, he was apprehensive about coming with me to get the ultrasound. For Cal’s ultrasound, we had a student who was learning, and it took over 3 hours. It was not the best experience, so he was understandably not excited about sitting through another ultrasound – especially since he was one of only a handful in the office that week.

After some back and forth conversation, Tyler decided he would come with me to get the ultrasound. There was a chance that it was going to be our only ultrasound for Ann Bailey, and I wanted him to be there to see our little angel. Little did we know that was the first of many ultrasounds, imaging appointments and other tests. He needed to be there and thank God he was!

Tyler is government and travels a lot for work. I do not always plan on him being with us, but for important tests, I try to schedule them when he can be there. We are in this together and we need each other. I have a lot of military friends, and my advice is this: if you have an appointment, do not go alone. If your spouse cannot be with you, bring a relative or a friend. Receiving news on Diagnosis Day is not something someone should go through alone.

In the Room: When the Tech Got Quiet

Thank God it was the holidays, so the students were home for winter break. We had the head ultrasound tech that day, which was such a blessing. She was performing the anatomy scan and she was abnormally quiet. This ultrasound was different from our previous ones. In the past, the techs were bubbly – talking about my perfect little peanut, showing me their perfect brain, healthy kidneys, a nicely shaped back and spine and that everything looked great.

Ann Bailey’s ultrasound was different, regardless, she was – and still is -our perfect little peanut, just like Mac and Cal. Our ultrasound tech was a little bit older, very experienced, which I am grateful for. She was not bubbly by nature, so at first, I did not necessarily think anything was wrong. Still, she was very quiet – possibly abnormally quiet.

The Moment Everything Changed

After about 20 minutes, she paused and looked at us. She said that she wanted to show us a couple of things. She showed us Ann Bailey’s brain, which was pulling in the back, shaped like a lemon – appearing to be a Chiari II Malformation. She then moved down the spine and showed up at an opening around L2-S3. It appeared that the spinal cord was outside of her body and that her back had not fully closed. She explained that both findings were typical of Spina Bifida and that she believed Ann Bailey had Spina Bifida.

She told us she was going to speak with the doctor and have them review the images, and that they would both be back shortly. She explained that this was not an official diagnosis, as she was an ultrasound tech, but she wanted to help prepare us for what she believed the doctor would confirm.

Five Minutes Alone (That Felt Like Days)

Tyler and I were in the room alone for maybe five minutes, but it felt like days. We took a moment to look up Spina Bifida, as we knew nothing about it. We learned that our daughter would likely not be able to walk, would be in a wheelchair and we kept seeing references to neurogenic bladder and neurogenic bowel. We skimmed past that part because we were so focused on the possibility that she might not be able to walk. We were in shock – beside ourselves – and both in tears. I was incredibly thankful that Tyler had come with me that day.

The Diagnosis Confirmed

After several minutes the ultrasound tech returned with the maternal-fetal medicine doctor. They both confirmed the diagnosis of Spina Bifida and a Chiari II Malformation.

The Days After: Appointments, Decisions, and a New Normal

Since we were planning to move to Virginia, I had already seen my new doctor there, whom I really liked. Tyler met him with me. Ultrasounds are done differently in Virginia than in Illinois and Alabama. In Alabama and Chicago, they are done in-clinics, which is what I was comfortable with, so I had my ultrasound at Northwestern Medicine in Chicago.

I was scheduled to see my midwife afterwards, but I had already transitioned my care to Virginia, so it was meant to be just a “goodbye” visit… That changed quickly – it was so much more than a goodbye.

While the Northwestern Medical clinical team gathered our next steps, Tyler and I moved into an exam room in the back of the clinic, near a back door so we could have a few minutes to pull ourselves together before leaving. My Midwife checked on us a few times and answered our questions. As always, she provided professional advice and kind words of encouragement with care and compassion.

During that time, we composed ourselves enough to leave through the back door. As a designer, I fully support always having a back door for a discrete entrance and exits when needed. No one in an OB-GYN office wants to see an upset husband and pregnant wife – it is heartbreaking.

Tyler and I called our parents on the way home. We went home to process everything before picking up the boys from daycare. The next day, we had planned to go to Winter Wonderland at the Navy Pier. Tyler did not want to go, but I felt like we needed to keep our lives as normal as possible. We needed to transition from our old normal to our new normal.

On December 21, 2019, I bought the tourist photo of our family because it marked the first day of our new lives after Diagnosis Day.

I was scheduled for an MRI; we were scheduled to see the Spina Bifida Clinic specialist at Northwestern Medicine in Chicago. Everything happened quickly – it was extremely efficient, incredibly professional and completely surreal.

More to come after Diagnosis Day, but for now, this is enough to process.

I recorded a video of the boys the night of Ann Bailey’s diagnosis. I wanted to remember what they were like that day. They were the same then as they are now; silly, love one another fiercely, kind, caring, compassionate. Now they just love bigger and with more intention than they did then.

One Thing I Want You to Hear

If you’re approaching an appointment that scares, you—or you just received a diagnosis—please don’t go alone. Bring your spouse, a friend, or a family member. And if you’re reading this from the middle of your own “before and after,” I hope you’ll keep going. There is still hope.

A Closing Prayer

Lord, thank You for being near to us in moments we never expected and for holding our hearts when we feel overwhelmed. Fill us with Your peace that passes understanding. Give us wisdom for each next step, strength for today, and hope for tomorrow. Surround our family with loving support, and help us to see our child the way You see her—fearfully and wonderfully made, deeply loved, and full of purpose. Teach us to trust You in the unknown, and to carry Your love into every appointment, every conversation, and every day. Amen.

A Hope-Filled Bible Verse

“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” —Romans 15:13