‘Are you going to keep her?’ We never thought it would happen to us. I prayed for her to be ‘normal.’: Mom details Down syndrome acceptance journey, ‘She’s changed our lives’

‘Are you going to keep her?’ We never thought it would happen to us. I prayed for her to be ‘normal.’: Mom details Down syndrome acceptance journey, ‘She’s changed our lives’

It was just another day, going to my pregnancy appointments. I was 20 weeks pregnant and went and had my 20-week anatomy scan. Basically, when you are 20 weeks pregnant, they do an in-depth ultrasound and check everything, from the basic anatomy of the baby’s body—like making sure they have all four limbs along with ten fingers and ten toes—down to the complicated anatomy of their heart, making sure everything is pumping and flowing like it is supposed to.

I went to my routine doctor visit afterward to talk about how everything looked in the ultrasound. Everything looked and measured ‘perfectly,’ which is the word they used in their charting. Except she had a little tiny light spot on her heart. They called it an echogenic intracardiac focus or an EIF. It is a small white spot seen in the baby’s heart during an ultrasound examination. EIFs are found in about 3 to 5% of normal pregnancies and cause no health problems. One of my midwives reassured me, ‘These ‘spots’ are pretty common, and I see them often.’ The other midwife told me, ‘I have only seen this a handful of times in my 20+ years of practice.

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I was worried sick. No one wants to hear something could be wrong with their baby. Because of what was seen in the ultrasound, the midwives chose to do a panorama prenatal blood screen. Keep in mind, I opted out of getting the routine genetic screening done at 14 weeks because, for some reason, I just did not feel like it was necessary. A panorama blood screen is able to detect any sort of genetic anomaly, such as Trisomy 21.

I still remember the day like it was yesterday when we got the results. I was at work when my midwife called me to let me know they had received them. I remember answering the phone and I already knew what she was going to tell me. ‘Your baby is high risk for Trisomy 21. In other words, there is a 98% chance your baby has Down syndrome.’ I said, ‘What? Are you sure you called the right person? My baby?? There is no way. This has to be some sort of a mistake. Did they get my blood mixed up with someone else?’

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I have never had so many different emotions rush through my body at one time. I walked outside at work and cried. I cried hard. I called my mom and told her and cried some more. I called my fiancé Dalton and shared the news with him, and he also thought there was no way. Not our baby. I cried for 4 days. At 24 years old, it is just not something that ever even crosses your mind, let alone something any parent is prepared to hear. Dalton mentioned the other night, ‘You just never think it could be you.’

It wasn’t yet a confirmed diagnosis of Down syndrome. Following our blood test, we had an extensive amount of doctor appointments. I had to transfer my whole OB care from my midwife to a doctor, due to having a high-risk pregnancy. We traveled north for the majority of our doctor appointments and saw many, many different doctors and specialists. It was a whirlwind of emotions because one doctor would tell us she doesn’t have Down syndrome, but the next would tell us she did.

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