NRL News

“Down syndrome is not a death sentence”- Parents reject doctor-scheduled abortion

by | Feb 22, 2022

By Sherri Pigue

Photo: Zoey O’Hehir

Zoey O’Hehir took the phone call from her OB/GYN while she was teaching her preschool class in Central West/Orana region in NSW, Australia. 

It was an important call – one she’d been waiting on for three weeks. 

Several weeks prior, a preliminary ultrasound screening and blood test indicated her preborn baby was at high risk for two different genetic syndromes, one being Down syndrome (Trisomy 21). Down syndrome is a genetic disorder caused when abnormal cell division results in an extra full or partial copy of chromosome 21, causing intellectual disability and developmental delays.

A first-time mom, this was all new and scary to Zoey. She agreed to additional testing and an amniocentesis.

And then she and her husband, Jake, waited – they waited for the results of the amniocentesis, and they waited for the doctor to call to schedule an appointment to discuss those results in person. 

But the call she had been waiting on was not the call she received.

The doctor called not to schedule an appointment to discuss the test results; instead, he called to inform Zoey about a decision he made – without input from either Zoey or Jake.

“It’s bad news,” came his voice on the other end of the phone. “Your baby has Down syndrome and I’ve scheduled…”

Zoey, then 21 weeks pregnant with baby Arlee, interrupted the doctor – “Scheduled what?”

“I’ve scheduled an abortion for tomorrow at 1:30 p.m.,” the doctor informed Zoey. 

No discussion, no counsel about her options, no questions about what Zoey and Jake wanted to do. No, there was none of that.

“We never talked [with the doctor] about the roads we would take if my baby was confirmed to have Trisomy 21,” Zoey stated in contact with Pregnancy Help News, “it was just assumed.”

But Zoey and Jake had made their decision even before Arlee’s Down syndrome diagnosis was confirmed – they wanted their baby girl to live.

The doctor’s response left Zoey in shock.

“I felt numb,” Zoey recalled. “I broke down in the classroom, but it wasn’t because [Arlee’s] Down syndrome was confirmed. I had accepted that well before the phone call. I was so upset that someone wanted to rip the baby I had grown for 21 weeks right out of me.”

The pain of that day was inflicted by her doctor.

“I was upset that someone wanted to end her life,” Zoey continued. “I was angry that [the doctor] wanted to abort my baby without even discussing any other options with us. I felt abandoned and empty. While this little baby just kept kicking and moving around.”

Zoey and Jake were equally determined in their decision.

“We would not be responsible for ending our baby’s life,” Zoey said, remembering their thoughts. “We were not making that choice…we just couldn’t live with making that decision and questioning ourselves.” 

With months left in her pregnancy, Zoey had a lot of medical appointments ahead. 

She often left those appointments in tears. 

“I felt like my doctor was angry with me because I didn’t take his way and abort my baby,” she recalled. “The care after we refused his abortion was minimal.” 

The doctor warned them – since they weren’t going to abort – to expect the worst, predicting complications for baby Arlee, including lifelong dialysis treatment, stillbirth, or neonatal death. 

Zoey later discovered her doctor notified the hospital that, in the event of a medical emergency, Arlee was to receive “no lifesaving medical intervention.” 

Another decision about Arlee’s life – made without the consent of Zoey and Jake. 

“He was no longer my doctor from that day on,” Zoey said. 

Despite this doctor’s plan, Arlee continued to live and was born on March 2, 2021.

Now less than a month from celebrating her first birthday, Arlee is “just like any baby,” Zoey noted. “She does everything an almost one-year-old does.” 

Arlee has Down syndrome; as for the additional complications Zoey’s doctor projected, Arlee has none. 

The doctor’s abortion plan hurt and angered Zoey, but it did not end Arlee’s life. Zoey and Jake had the courage and strength to reject the doctor’s choice for their daughter. It was their decision that saved Arlee’s life.

But this abortion response for babies with Down syndrome is not limited to this one pregnancy, nor is it limited to Australia.

Aborting babies with diagnosed Down syndrome has become a common practice in the UK and Denmark, with abortion rates ranging near 90% and even higher. Prenatal screenings – and accompanying abortions – led to a 2017 declaration that Iceland had “basically eradicated” Down syndrome within their country.

This happens in the U.S., too. Although some states are working to ban this type of lethal discrimination, 2021 statistics reveal that 67% of pregnancies that receive a prenatal diagnosis of Down Syndrome end in abortion.   

Prenatal screening is a double-edged sword; the same test that provides information can also bring great pressure. 

Heartbeat International’s report on Pro-Life Prenatal Diagnostics underscores this “great dichotomy”: 

“On one hand, we desire all mothers and babies to be healthy, and we should proactively educate them on how to achieve this. On the other hand, however, we must carefully construct our instruction in a way that avoids negatively influencing a client to seek an abortion if she should learn of a negative diagnosis regarding her baby.”

Christa Brown, director of Medical Impact with Heartbeat International, noted the weight of doctors’ recommendations: 

“Many mothers who face a prenatal diagnosis feel pressure to abort and are repeatedly offered the option to terminate their pregnancies by medical professionals even into their second and third trimesters.”

“Some medical professionals feel that the reason for prenatal screenings is to abort those with indications of medical conditions such as Down syndrome and some will only offer support to those who choose abortion,” Brown continued. “Of course, not all in healthcare share these opinions, and there are others who see the value in all children and realize women need support not abortion.”

Now over a year from that phone conversation with her doctor, Zoey has some advice for parents who are facing similar phone calls from their doctors: 

“Listen to your instincts. Breathe…take time to think. Don’t be pressured.” 

Zoey also has guidance for the medical community – calling doctors to be for others what her doctor would not be for her. 

“Be kind,” Zoey advises. “Remember we are all human. We have feelings. Show some empathy toward the parents… give them time to come to a decision.”

As for Arlee, Zoey understands what she gained by rejecting her doctor’s plan. 

“Arlee is the best thing in our life!” she said. “We are so blessed to have her.”

“Down syndrome is not a death sentence,” Zoey asserts. “You shouldn’t be refused life just because you have Down syndrome. Our baby was loved from the very start.”

Zoey’s doctor may not even think about that phone conversation back in December 2020. But there is no doubt it’s a conversation Zoey replays in her mind. Zoey looks her decision in the face every day. And it is good. And there is no regret about Arlee.

“She reminds us every day,” Zoey is unwavering, “that we made the right decision.”

Editor’s note: Heartbeat International manages Pregnancy Help News. Reposted with permission.

Categories: Down Syndrome