Sandy’s Story

I was pregnant with our first child in the fall of 2018, and my husband & I went in for our 20-week anatomy scan expecting to learn baby’s gender.

After the technician called 3 other techs in to do some of the pictures, the doctor finally came in to tell us that he saw something concerning within the baby’s brain. He suspected a neural tube defect but suggested an amniocentesis to be sure. 

A week or so later, we received the testing results learning that our child had spina bifida and a genetic condition called 22q11.2 deletion syndrome, a disorder caused by a small missing piece of the body’s 22nd chromosome. There were no further prenatal tests that could tell us how severe either of these conditions would be for our son so we had to decide whether we wanted to terminate this pregnancy or continue on.

In our state (Ohio), we only had about a weeklong window to decide on termination, and since there was a chance both conditions were mild, we settled on the fact that we would be parenting a special needs child. 

At 24 weeks pregnant I woke up in a pool of blood. We called the hospital right away and rushed in. During triage, the nursing staff said baby sounded and looked good on ultrasound. My vitals were all normal but I was still bleeding quite a bit so they settled me into a room to endure further testing. I bled off and on for a week, all the while our son had a strong heartbeat and otherwise I was doing well.

Finally, one of the residents realized that my water had broken and a placental abruption had caused the blood loss. At this point, the risk of infection to the baby and myself was high. The staff whisked my husband away to explain that our options were to focus on saving the baby by leaving me pregnant with no waters or saving me by birthing our son at 25 weeks.

After learning that he not only had spina bifida and 22Q, but now had been diagnosed with severe hydro encephalitis, the NICU told us there was little chance of survival. We decided to start labor.

I labored for 30 hours and after Harrison was born we both held him, sang to him, cried and kissed him for two short hours until his heart stopped beating.

Three months after Harrison’s death, we found out we were pregnant with our Rainbow baby, Clara, and her due date was exactly one year after his birth/ death.

Presently I am due July 4, 2022 with our second Rainbow baby daughter after a chemical pregnancy loss in January 2021. 

Read more about spina bifida here.

Read more about 22q11.2 deletion syndrome here.

Find out more about Project Finding Your Rainbow.

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