Sunday, February 25, 2024

Trisomy 18

The story of Kate Cox, a Texas mother of two, made national headlines in December when she was unable to obtain an abortion in her state after learning the baby she was carrying was diagnosed with what doctors said was a fatal genetic condition known as Trisomy 18 that occurs when there is an extra copy of the 18th chromosome, resulting in a range of potential abnormalities and difficulties. Doctors advised her that if she carried the baby to term, it could leave her infertile.

Despite the fact that the Texas law includes exceptions for a "life-threatening physical condition… or a serious risk of substantial impairment of a major bodily function," it does not include fetal anomalies. Cox's request for an abortion was denied by the Texas Supreme Court and she was forced to leave the state to have an abortion elsewhere.

Nebraska's legislature held a hearing on Thursday about a new bill that would add an exception for abortions in the state after 12 weeks in the case of a fatal fetal anomaly, a term used for babies considered "incompatible with life" outside the womb. The diagnosis and abortion, according to the proposal, would need to happen before 20 weeks of pregnancy, which is in line with Nebraska's previous 20-week abortion limit. 

Nebraska Senator Merv Riepe, who introduced the bill to the state legislature, told Fox News Digital that the aim of the legislation is "to fix" the current 12-week limit on elective abortions in Nebraska. 

"The legislation is allowing women who want-to-be-mothers and it is only after the 12-week limit that they discover they do not have a viable fetus," he said. "The determination the fetus is not viable recognizes the opinion of two physicians; with the diagnosis of the nonviable fetus, the mother has two choices- carry the nonviable fetus to full term or seek a medical abortion to terminate the nonviable pregnancy."

"The loss of a much-wanted pregnancy is heart-wrenching but may be necessary to preserve the health and life of the want-to-be-mother," he added. 

Lawmakers in Tennessee, which currently has a life at conception law, are also working to create a similar exception to the one proposed in Nebraska's that would allow abortions when it is believed the mother could become "sterile and unable to bear children" in the future if she carried the baby to term. 

Critics argue such bills would remove protections for babies with disabilities and allow children with fetal anomalies to be discriminated against and aborted even in late-term pregnancies. 

Beverly Jacobson, the mother of a 7-year-old girl with Trisomy 18 and Founder and President of Verity's Village, a nonprofit aimed at providing practical support for families who receive a life-limiting prenatal diagnosis for their babies, told Fox News Digital that oftentimes terms to describe fatal fetal anomalies, such as "incompatible with life," can be misleading. 

"My daughter Verity is nearly seven-years-old and there are hundreds - maybe even thousands - of babies, children, teens and adults in the United States like her who are living with Trisomy 18," she said. "These sons and daughters are in no way ‘incompatible with life’ as the medical community often labels them, and families and communities are stronger and better because of these children." 

"It's the unfortunate truth that many doctors push abortion to parents whose unborn children are diagnosed with a life-limiting condition," she added. "I hope lawmakers will do the compassionate thing by taking a stand for Verity and those like her who have Trisomy 18 or other disabilities so they will not be targeted to an even greater extent for painful, late-term abortion."

Kelsey Pritchard, the director of state public affairs at SBA Pro-Life America, told Fox News Digital that they feel for any mother who receives a difficult diagnosis for her unborn child, but criticized what she called the "abortion industry’s spin doctors" who "manipulate these stories to justify unlimited abortion and attack babies with disabilities."

"The abortion lobby is zealously trying to confuse the issue by conflating fetal anomaly diagnoses with life-threatening emergencies experienced by pregnant women," she said. "The truth is that most fetal anomaly conditions do not put mothers at greater risk, and in the instances when a woman is in danger, every pro-life law in the country allows doctors to act."

Dr. Tara Sander Lee, the vice president and director of life sciences at the Charlotte Lozier Institute, echoed this sentiment, arguing that many babies with a prenatal diagnosis die not because of their medical condition, but because of the "discrimination and denial of treatment from the medical establishment."

"Before birth, as many as 60% of babies diagnosed with trisomy 13 or 18 are aborted," she said. "When given the proper care, survival rates are much higher. A Japanese study shows that when babies with trisomy 18 received appropriate care and surgical interventions, 81.5% survived until discharge."

"Some babies with T13 or T18 who receive surgery to treat their heart problem have an even longer median survival of 15 and 16 years," she added. "Too often in America, we fail to accept every child as a gift, regardless of ability. The obvious truth is that abortion is not a cure or treatment for the child’s condition."

Nebraska Family Alliance Policy Director Nate Grasz said discriminating against people with disabilities is wrong and that "those with different abilities are worthy of life and should always receive proper medical care."

"The Nebraska Pro-Life Coalition urges lawmakers to take a stand for babies in the womb who are believed to have a life-limiting condition and their families," he said. "We urge senators to stop LB 1109 to protect these precious children – the most vulnerable among us – from abortion at the point when they can feel pain."

Jacobson detailed the experience she had when she received the Trisomy 18 diagnosis for her daughter in an interview with Fox News Digital. 

"I remember the doctor saying that I had an elevated risk for this baby I was carrying, to have a condition known as Trisomy 18 and I was floored," she said.

As a military wife and mother to eight children, when Jacobson found out she was pregnant, she said she was just trying to get her mind wrapped around the fact that she was going to have a ninth child when she got a phone call she said she would never forget. 

"I had never heard of this before... so I was trying to process this information," she added. "I kept pressing her [the doctor], ‘Well, what does this mean? What if our baby does have this?’ And I just remember it getting quiet on the other end of the phone, and then she said, ‘Well, if your baby does have this condition, most likely, most babies will pass in utero and, if they do make it to birth, they live maybe 5 to 15 days with pretty severe defects and difficulties.’" 

"We just immediately said, 'Okay, whatever happens, we really don't know what's going on, but we do know that we love this baby, whether there are complications or not, for us, abortion is simply not an option, and we just want information to know how we can be prepared," she said. "We made that pretty clear when we spoke to professionals, so we did not experience something that many families do."

But, Jacobson said conversations with two different professionals stuck out to her and while they didn't tell her she needed to abort her baby, they did tell her that "if she survives to birth, she will live a futile life." 

The first words out of one of her doctor's mouth at a consultation were: "So you're here to talk about your retarded daughter," which Beverly said left her stunned. 

"The head of the department at the university hospital opened the conversation talking about my unborn daughter in this manner and went on to say that if she were to survive, she would live a futile life," she said. "That's a direct quote, a futile life. Those words still ring, I can still hear that, my body still reacts, I have a visceral reaction when I think about that meeting with him." 

"He said that she would be a drain on the family mentally, emotionally and financially," she added. "None of that has come to pass. I didn't know that was coming. I wasn't prepared to have to advocate for my daughter in that moment, because I was just not expecting a medical professional to speak to me in those terms when I was there to get information about what our daughter might need if she were to be born alive, if she were to overcome the statistics."

After receiving the diagnosis, Beverly said that for the first 4 to 6 weeks she and her husband were "actually preparing to bury" their daughter.  

"We were making plans for what we would do for a memorial service, where we would take her little body, just conversations that you do not expect to be having as parents when you are expecting a little baby," she said. "My heart was crushed, I was dealing with depression, severe anxiety, and I had these other children to care for," but "about a month and a half after receiving the diagnosis, when we started to get connected with online support groups, and I began to see that actually there are some babies living, not just babies, children, even teenagers, even some young adults," living with Trisomy 18. 

Beverly said the medical professionals she spoke with continually made insinuations that she and her family would not have a quality of life if they chose to go to term with their disabled child.  

"I've known many people with disabilities and I can't imagine not having known them and having had their influence in my life and just their perspective," she said. "So as much as it was a fearful experience and alarming to think that I would have a child with significant needs, I began to have hope that we could meet her alive."

Beverly and her husband have since started Verity's Village, named after their daughter, which serves hundreds of families with children who have Trisomy 18 and other similar genetic conditions.

"Now that we have a nonprofit serving families in our position, we know we hear from almost all of them that abortion is presented as the logical next step once you get a diagnosis, I'm very grateful that was not brought up," she said.

"It's a sensitive topic. I understand that," Beverly said. "I know it's so controversial."

"Obviously she was born alive, we did get to bring her home from the hospital," she said. "In a sense, we were a success story because she lived and people didn't expect her to live, but really, bringing her home was the beginning of a journey."

"When we realized how difficult that journey was and I was in the community talking to families, my heart was drawn to these mamas that were given a diagnosis and they were so scared and so overwhelmed, hearing nothing but dire predictions of what would happen to their baby," she said. "Would they live, would they not live, I was stunned. I even heard of a mom who, her doctor scheduled her abortion before she even knew about the diagnosis."

"For me, the pregnancy part was so hard," she added. "I'm a planner, I like to know what's coming ahead of time and not knowing whether she would be born alive, what our family dynamics would look like if we brought her home, that was a very anxious time for me. So I found myself wanting to support these moms."

Beverly said that for those reasons, Verity's Village was born and has been operating for almost three years, helping moms understand that they have other options besides terminating their pregnancy. 

She also said she would like to see the term "incompatible with life" erased altogether and instead replaced with "life limiting diagnosis because there are some limitations for these children, these babies, and yes, it is true that many do pass away in utero," but "we certainly didn't expect to have almost seven years with her."

"Verity has given us so much," Beverly said. "She is non-verbal. She's non-ambulatory. She doesn't do for the family like my other kids can cook and clean and help… But you know what? She doesn't have to do a thing. She is her own self and brings us joy and delight and my kids love her fiercely."

"They are growing hearts of compassion, they're learning to serve others in a way that I don't know how we would have given them that opportunity, to put others before self, and to look for others' needs if they hadn't lived it day in and day out with their little sister."

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