Boydston Testimonial

When I was 10 1/2 weeks pregnant last year, I saw a specialist in high-risk pregnancies who said she saw some fluid in the back of the neck of the fetus. She said it could be nothing and resolve itself, could be a heart defect, or it could be a chromosomal abnormality.

It was too early to do anything at that point, so I was advised to discuss our options with my OB/GYN. Since we weren’t going to abort, we didn’t do any prenatal testing at that point and at 16 weeks I had a normal ultrasound and everything looked good.

But at 20 weeks, we went to another specialist for a 3-D ultrasound. She saw two brain cysts, which she wasn’t too worried about because they can be common. She also saw our baby’s fists were closed and he had a major heart defect. She suspected Trisomy 18 (Edwards syndrome) but recommended we do testing because there was no point in going to the pediatric cardiologist if he had Trisomy 18.

Because the risk of miscarriage was greater than the chance of the baby having an abnormality, the specialist recommended the Harmony test, which she said was 99.9 percent accurate. She said if it came back at high risk or positive, then we should follow up with an amniocentesis – and we agreed. I did more research about the Harmony test later, but the doctor never recommended we talk to a genetic counselor.

The test came back negative – .01 percent chance of Trisomy 18 – and so we went to the pediatric cardiologist. That doctor wanted proof that our son didn't have a chromosomal issue, and accepted the Harmony results.

The doctor confirmed the heart defect and we had several appointments after that to see how our baby was doing. The doctor felt it was a minor case of hypoplastic left heart syndrome (a rare heart defect) and that it could easily be corrected. We met with the surgeon and he was very confident that the operation would be a success.

We continued to have ultrasounds and we did see baby’s hands open, so we basically thought his fists being closed at 20 weeks was a fluke. At the end of December, I started having too much amniotic fluid (which is common with a heart defect) and our baby stopped gaining weight.

I was sent back to the specialist in high risk pregnancy I had seen at 10 ½ weeks, and this doctor saw some issues that hadn’t been noticed before – wide forehead, and something on the brain that only an MRI could detect. She suspected an abnormality and said that even though the Harmony test was a screening they had ruled out the three major trisomies, our baby could have something else.

At that point, I was done with testing and we decided to just hope for the best and prepare for the worst. A week and a half later, Hunter Wyatt Boydston was born with full-blown Trisomy 18. And he died four days later.

The difference between "screening" and "diagnostic" means nothing to the average person. We now understand that there is no reason to do a screening, if it’s not going to be accurate. Doctors should just recommend an amnio and be done with it.

The whole selling point behind this prenatal testing is: "Non-invasive! Safer than the amnio! Get results sooner!” (So someone can have an abortion earlier, or have more time to prepare).

If a person is told that their chances of having a miscarriage are greater with an amnio than having a baby with a chromosome abnormality; and if they are told that they can have a blood test that is 99.9% accurate, most women are going to do it – and trust the results.

I even believed the results after Hunter was born and thought the doctors were all wrong!

I have done a ton of research on this topic. Harmony has never reported any false negatives that I have found on their websites and in articles. When I tried calling them, they wouldn't speak with me. They won't speak with patients – only with a doctor or genetic counselor. I also e-mailed them - no response.