“Life” refers to the state of being alive, existing as a living organism. It encompasses the characteristics of growth, development, responsiveness, and the ability to sustain vital processes. We explained in another article that despite the severe handicap, a baby with acrania fulfills these characteristics.

Now let’s delve into the topic of the statement “Your child is not compatible with life”. I thought about this phrase a lot, especially when my little daughter was still there in this world. After deep contemplation, I firmly believe that it should never be uttered by anyone, especially healthcare professionals. Allow me to present the reasons behind this conviction.

This statement is subjective

The statement “Your child is not compatible with life” is subjective because it carries an inherent bias based on assumptions and judgments about the quality or worthiness of a human being’s life.

Determining whether a specific condition or circumstance makes a life “incompatible” is a complex and value-laden judgment that varies from one person to another, from one doctor to another.

Healthcare professionals should aim to provide objective information about a condition’s potential challenges and outcomes without making definitive and subjective statements about a person’s “compatibility” with life.

This statement violates two basic principles

Respect of human’s being inherent Value and Dignity

Every human being, including an unborn baby with a severe handicap, possesses inherent dignity simply by virtue of being human. This dignity is not contingent upon external factors such as physical or mental abilities, achievements or the length of one’s life. Regardless of our circumstances, we all share a common humanity and deserve to be treated with equal respect and value.

Despite the severity of acrania and anencephaly, the unborn baby’s life has intrinsic value and should be respected and protected. Denying their “compatibility” with life based on their handicap undermines the principle of inherent value and dignity.

Respect of equal Intrinsic Worth and Non-Discrimination

Treating all human beings with equality and without discrimination means recognizing the rights and worth of each person regardless of their physical condition. Asserting that a severe handicap makes an unborn baby “not compatible with life” would be discriminatory and deny them equal rights, treatment and opportunities.

Although acrania and anencephaly cannot be cured, which means the missing bone cannot be recovered, the child, a human-being, still has the equal right to live his or her life. That life may be short, but it is not worth less than anyone else’s life.

Upholding the principle of equality demands that we reject such discriminatory statements and ensure that every life, regardless of the presence of a handicap, is valued and protected.

This statement does not reflect the reality

This is the fact: all unborn babies, regardless of their health or potential challenges, are compatible with life because they are already living in their mothers’ wombs. They are developing, growing and undergoing various processes necessary for their existence.

The fact that they are alive demonstrates their compatibility with life. While the presence of certain conditions, for example severe handicaps like acrania, anencephaly, may introduce unique challenges and complexities, it does not negate their inherent compatibility with living.

No one has the right to label a living person as “incompatible” with life.

Ethical Responsibility

Healthcare professionals have an ethical responsibility to provide unbiased and accurate information to patients and their families. Stating that a specific condition makes a life “incompatible” can lead to biased decision-making, misinformation and the potential for unnecessary terminations.

Our story

I experienced this firsthand. We consulted three doctors about our case. The first one was my wife’s gynecologist, who had referred us to the second doctor, a more experienced gynecologist. This is him who diagnosed my daughter with acrania. He was right about the diagnosis. My daughter really had acrania. And the third doctor was a pediatric neurologist. She was recommended to us by the second doctor when we asked to understand more about our daughter’s condition.

The doctor who diagnosed acrania announced the news with this phrase “I’m sorry. But your child is not compatible with life”. In the following weeks, the doctor informed us clearly about the potential risks in different scenarios. He apparently favored the termination of the pregnancy as soon as possible and didn’t hide it. To him, it was not worth it to continue. Our child won’t be able to live long. And if she lives, she won’t be capable of doing this thing or that thing. He clearly associated the value of life with those easy-to-understand criteria: physical, mental capacities and achievements.

In particular, in order to convince my wife, he told her that: “You should terminate the pregnancy now and preserve your uterus for a future pregnancy”. Once my daughter was born, his recommendation became: “You shouldn’t try to get pregnant again given your uterus’s conditions”. I understood that this doctor always favored the option with the least of risk. However, to me, this was a deceit to bias the patient’s decision.

When being informed about our daughter’s diagnosis, the first doctor said that it didn’t make sense to continue with a headless child. No, these babies with acrania have their heads and brains. They lack part of the skull bone. That’s it. I personally don’t think her knowledge about acrania was trustworthy.

The pediatric neurologist answered all our questions and to my understanding, she was truly an expert of kids’ neural conditions. During our two-hour conversation she never stated that our child was “incompatible with life”. She informed us about the condition, the potential outcomes and the related uncertainties. In no way, she tried to bias the patients in their decision-making process. We didn’t know about what she believed that we should do. Even when we asked for a recommendation, the doctor pointed out that this is the parents’ decision. We left the meeting with more understanding of our daughter’s disease and the current situation. In my opinion, that is how doctors should conduct themselves in such circumstances.

Conclusion

I believe that it is unjust to label a child with acrania or any other severe conditions “incompatible with life”. First of all, the statement is not true. Any human being alive is compatible with life. Even with severe handicaps, the value and worthiness of a life remain intact and cannot be measured with external criteria like mental, physical abilities or achievements. In particular, when these criteria are used to determine the value and worthiness of human’s life, the outcome becomes extremely subjective.

Lastly, this encompasses the ethical obligation of healthcare professionals to refrain from labeling a child as “incompatible with life.” It is not within their purview to make such declarations.

It is essential to provide objective information, support, and guidance to parents and families, enabling them to make informed decisions about their healthcare while respecting the inherent value of every single human life.