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The Best Pieces of Us

Celebrating Parenting a Champion with Spina Bifida

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  • laurenwindt

The Road to Diagnosis

Updated: Nov 9, 2022

We had been here before...the hospital...the office waiting room... the ultrasound room, but this time instead of excitement and anticipation we were plauged with fear of more bad news, fear of the unknown.


We waited weeks to be back at this office, to learn more about our sweet babe and while we were petrified of getting additional bad news, we held on to hope.


We started the ultrasound and I could barely muster the strength to look at the images because this time was different, I now knew what I was looking at....or better yet looking for. After 45 minutes of meticulous imaging and measurement taking the ultrasound tech excused herself and our MFM traded places.


Her demeanor was immediately different than the last appointment. She greeted us with kind and happy eyes (I think she was also smiling but that was hidden behind her mask) and said "okay, I think I have wrapped my head around this and can make a diagnosis". There in that moment, full of a mixture of fear and hope, our sweet little girl was diagnosed with neural tube defect which is a form of Spina Bifida.


It was in this moment I finally let myself breathe. We had a diagnosis, we had a prognosis and compared to our last appointment I felt a huge weight of relief wash over me. Our doctor went on to explain what a neural tube defect was and the next steps. At this time, she believed that the spinal cord defect was completely skin covered which was best case scenario. We were referred to Cleveland Clinic for more testing and imaging.


Our appointment at Cleveland Clinic 4 weeks later went off without a hitch. All of our care providers in Cleveland and back in Columbus were on the same page, that the meningocele was skin covered, the fuild on her brain was stable and she displayed movement in her lower extremities with no clubbed feet.


We left there feeling even more encouraged and hopeful of what the future held for our sweet girl. If there was any positive take away from the journey to diagnosis the nurses, technicians and doctors who crossed our path were nothing but wonderful.


Finally feeling optimistic and hopeful of what the future held, we were able to return to planning and preparing for our baby. The rest of the summer was filled with celebrating our sweet girl and preparing for her arrival. I've said it before and I'll say it again I thought I was prepared.

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