Monday, August 5, 2013

Incompatible With Life, a Paper

The following was written by Ashley, a mother who lovingly carried her beautiful son, Emery, to term with Anecenephaly. She writes about the term "Incompatible with life" for her college English requirement. 



Incompatible With Life-By Ashley Leelee
            To hear the words your child’s condition is “incompatible with life” is a sentence that can rock a parent to their core.  It is terminology commonly used by doctors to inform patients about their unborn child’s fatal diagnoses.  From the moment a mother knows of a pregnancy, she creates a bond with that child and that grows every day as the baby develops.  When you get the news you’re expecting a child, the last thing you imagine is for the clock to already be counting down the days of your baby’s life.  Hearing that your child is getting closer and closer to the end of their very brief life is hard enough to hear, and such harsh wording sometimes forces families to make decisions they will regret.  Those words are better used to describe opinions rather than the reality of what a family is facing and the choices they have. No matter what a child is diagnosed with, doctors should not force their personal opinions and incorrect terminology onto their patients, but instead face the news with compassion and honesty laying out all options.
            There are numerous life threating and fatal diagnoses that a family can hear about their unborn child that are often described as incompatible with life.  There have been families who experienced such harsh wording but still stood up and fought for their child’s life. They were able to prove doctors incorrect and show that there was great value in the life their baby lived, even if it was much shorter than most.  Recently Pope Francis encountered a family whose child was born with anencephaly. Anencephaly is a fatal birth defect that prevents the neural tube from closing. It affects 1 in 1,000 pregnancies and is always fatal.  (Neural Tube Defects) Pope Francis said “The parents wished to welcome the gift of life” in reference to the parents choosing life for their child instead of terminating the pregnancy like so many other families who face the same diagnosis do.  (Jalsevec) His explanation was worded perfectly to explain why the parents ignored their doctors and decided what was best for their family.  Though their baby may not have a long life it can still be one with quite an impact.
            An additional family that faced the devastating diagnosis of anencephaly was Becky’s* family.  Becky’s mom, Jamie*, had her first ultrasound when she was 20 weeks pregnant.  During the ultrasound she was told, that something was very wrong with the baby, and she was the life support system for her baby, once the baby was born it would only live for a few hours, or days if she was very lucky.  Jamie did research online and came across stories of families whose baby’s had lived longer then doctors expected and decided to carry to term.  At 40 weeks she was induced and Becky was born.  She was weak and her temperature and heart rate started to drop.  Doctors and nurses were prepared for her to die, and Becky still kept going.  She fought long enough to go home on hospice case and started to become stronger.  The hospice pediatrician was cold and clinical when he told Jamie, “I give her 1 to 2 weeks tops.  Everything she is doing is reflex, you don’t even have to feed her if you don’t want, she can’t feel anything, even love.”  Becky again proved everyone wrong, besides the fact she was surviving a lot longer than anyone anticipated she was doing things that no one thought was possible.  She ate, she cooed, she reacted to sights and sounds and knew when she wasn’t being held.  As she got older she was able to eat from a spoon and she brightened her family’s life with her smile. At 10 and a half months Becky got sick and passed away peacefully.  (Jamie) Though anencephaly is fatal this mother and the strength of her daughter defied the odds and showed everyone how amazing and precious life could be.  Becky and Jamie’s story inspires many other families who are facing the same devastating circumstances.  It helps them to realize that these babies’ lives, despite what the doctors say about a child’s life being short, can be one of love. 
            Trisomy 13 and 18 are also a fatal diagnosis during pregnancy.  Even though often times these families are told that their babies are “incompatible with life” there was a study done and they found the median age of these children to be 4 years old. (Janvier) Though these children face many life limiting situations their parents describe them as happy.  Four is not nearly the average median age of a healthy child, but when faced with thinking you will never know your child, four can be an inspiring number.  Having a doctor force personal opinions and ideas that a child will never survive can force families to decide to terminate and miss out on memories and valuable time they could have spent with the child.
            There are so many medical advancements in the past few decades that a lot of information about the causes of fatal birth defects have been discovered that had been unknown for many years.  For instance, folic acid has been shown to help prevent neural tube defects, though a lack of folic acid it isn’t considered a cause.  (Neural Tube Defects)  Another possible breakthrough is something recently tried during a pregnancy with a baby diagnosed with Potter syndrome. A baby’s kidneys fail in utero with Potter syndrome, which causes low amniotic fluid which then prevents lung development. It is considered a fatal diagnosis with no known prevention. (Potter Syndrome)  Jaime Herrera Beutler, is a U.S. representative who had a baby diagnosed with Potter syndrome.    Doctors told her that because her child had Potter syndrome the baby was incompatible with life and if she made it to term she would only survive a few minutes, at most.  They were told dialysis and kidney transplants were not possible and nothing could be done to help the baby, and still the family didn’t give up.  Johns Hopkins Hospital performed an uncommon procedure and injected the womb with saline solution in place of amniotic fluid.  Twelve weeks premature, her baby, Abigail, was born with fully developed lungs and no kidneys.  Currently Abigail is the only baby known to survive Potter syndrome.  She is on dialysis and will need a kidney transplant, but the rare procedure of injecting saline solution seems to be the reason her lungs were able to develop properly, which makes a kidney transplant much more possible.  (Peterson) The family stood up for the life of the child, instead of following the advice of the doctors and gave the baby a chance at a life.  With major medical advancements, maybe even a healthy one.
Duke University is conducting ongoing studies about neural tube defects, and more specifically, anencephaly. After receiving the diagnosis of anencephaly, the Cortez family was just one of many who researched the diagnosis.  During their research they came across the studies Duke was doing and were able to participate in both.  With the first study, they answered medical questions, and sent in blood samples from mom and dad, as well as cord blood from their son.  The second was a psychological study in which they answered questions about the emotional effect of having a child with anencephaly.  Since the goal of the study is to gather information to try to find a cause, they hope that their contribution will help with a better understanding of anencephaly. (Cortez)
Early termination of the pregnancy is the most common choice made when a baby diagnosed with anencephaly.  (Obeidi) If all families who were told a child is incompatible with life and ended the pregnancy, medical advancements made in treatment and prevention would not be possible.  Perhaps eventually they will be able to prevent, or treat many of these now fatal defects. 
            Doctors telling a patient that their baby is “incompatible with life” sometimes cause a family to make a decision that they later regret.  Often times, with a fatal diagnosis, ending the pregnancy, is the only option that the doctors present. Those who choose that path often regret their decision.   After seeing a specialist, a mother whose child was facing a fatal diagnosis was given 2 pills and told to come back in 2 days to deliver, only half way through her pregnancy and the doctors were ending it early.  She said “it was all a blur, and to be honest I felt railroaded into it, as everyone just assumed I wanted to induce early.” (Samantha*) She was never given the chance to process what it meant that her child wouldn’t survive, and never given a chance to make a plan on her own as to how she felt it best to handle the diagnosis.  Though she was induced early and her child was stillborn she still talks about her son, and her kids know about him and refer to him as their brother.  (Samantha*) Another mother told a story of her pregnancy with twins, one healthy, one diagnosed with anencephaly. As a suggested solution the doctor offered to terminate the pregnancy of both babies, the healthy and sick one.  To kill a healthy baby, just for the simple fact that one will not live is an outrageous idea that does not seem to be reasonable option.  The mother told the doctors no and then later on during the pregnancy the doctors offered to terminate just the sick baby, but it was a big risk still to the healthy one.  Again the mother refused.  Though one of her twins didn’t survive she is thankful for her pregnancy with both babies, and that she got to watch both of them growing during regular ultrasounds.  In regard to her decision to carry her babies to term she said, that it was one of the hardest things she has done in her life, but one she appreciates and cherishes forever. (Mary*)
            Another common misconception about babies with fatal birth defects is that parents who continue the pregnancy are hurting the baby and they are suffering.  Any family who has held their baby would tell you differently.  When finding out that your baby will not survive parents are faced with a decision of termination or carrying to term will often tell you that the first thing they ask is what the experience of their child will be.  Carrying a baby, even with major physical defects has never been shown to cause a baby physical pain, because some babies are unable to feel any pain at all.  Babies who are unable to feel pain may have some senses, there are degrees of reaction to light senses and vibrations. (Jaquier)  Other babies are able to feel pain and while carrying to term is not hurtful to the baby, ending it early may be.   Terminating a pregnancy can be done in a variety of ways many of which can cause the baby pain. Induction abortion is an example of one that is used in medical cases, such as a fatal diagnosis.  It involves injecting the amniotic sac with a solution and it burns the child and forces contractions, causing the mother to go into labor.  (B. Heather) Since it burns the baby, if the child is alive when it preformed it can be a very painful thing.  Carrying a child to term is a very unselfish thing and no parent would ever go through with it if they knew it would cause their baby more pain. 
            Another side to receiving a fatal diagnosis is the families who have carried babies to term, which is a completely different experience than those who end the pregnancies.  Carrying a child to term is a decision sometimes faced with the opposition from many, occasionally including doctors.  Whether it is personal belief, experience, or just not understanding the point of carrying to term a lot of the time the term “incompatible with life” is just the start of convincing someone to end a pregnancy early.  A mother told a story of how when she received the fatal diagnoses of her child that she was told in a way that it seemed like it was not a heartbreaking diagnosis.  She felt as though the technician thought the word fatal was “music to their ears” and just want the wanted to be hearing.  After making a choice to continue her pregnancy she continued to face a lot of opposition from her doctors, who asked, “Why prolong the inevitable” and “you do realize ‘it’ won’t live”. (Breanne*) Instead of supporting a patient from a medical standpoint the way a doctor should, she had to fight for her right to carry her baby.  At no medical risk to the mother, why would a doctor be so forceful in the idea that what she needed to do was end the pregnancy.  She said she will never regret fighting for her daughter, that every memory is a blessing and one she will hold onto as long as she lives. (Breanne*)  A mother would have missed an opportunity to know her child, to share memories and an inseparable bond if she had followed the advice of her doctors who thought no other option was realistic except terminating.  In cases where there is no medical risk to the mother’s health to carry a baby to term, there are ways to care for mother and baby.  (Davenport)
            Organ donation is a common question parents have when they receive the diagnosis stating that their child is “incompatible with life.”  They feel as though being able to donate organs to help another baby, who is awaiting a transplant, would be a benefit to carrying to term.  There are many rules that go along with organ donation, including size of the child and gestational age, how long the child lived and what the birth defect was.  For example anencephalic babies are generally unable to be considered for organ donation due to the fact they are not able to declare them brain dead.  In babies with anencephaly, their brain is not there or is missing most of the brain; the baby does however have a functioning brain stem which makes it nearly impossible to declare them brain dead.  It is necessary to declare a person brain dead in order to be able to donate most organs.  Another common problem is that anencephalic babies most often die from heart failure or their breathing slows until they die, both of which damage any organs that are able to be used after death.  (Organ Donation Law)  Because of this most families are told that it is impossible to donate organs since it is so often an area not defined in black and white terms, and most cases they are not eligible.  Rick* said that upon hearing of his grandson’s diagnosis with anencephaly that they asked the specialist about organ transplant.  The specialist explained to the family that it would not be possible.  Once his grandson was born however, the national organ donor registry was contacted by the hospital and told the family would be able to donate heart valves.  This came as a welcomed surprise to the family, and the day after he was born they received a call that said his heart valves would be able to save the lives of 2 other babies.  (Rick*)
            “Incompatible with life” terminology is more the just a description about a diagnosis, unfortunately using those terms to try and explain the prognosis of the child it often becomes a way for a baby to be discredited as a valuable life and therefore an important thing to pay attention to medically.  Instead of just explaining the diagnosis, and what it means, using harsh, common terminology often is influenced by medical professionals’ personal beliefs.  (Mayer-Whittington) Harsh words have swayed families to make decisions they regret, and they are often uninformed unless a lot of research is done outside of the doctor’s office.  Because of many patients wanting to carry a child to term, doctors need to find a new way to explain the diagnosis and find a way to separate personal beliefs from medical facts. Just because a child may not be born alive, or that they may not live long does not mean it is incompatible with life.  Why would the doctors get to decide when to take a child’s life away?  It is an important issue that needs to be approached with compassion and understanding, instead of judgment.


Works Cited
B., Heather. "Terminating Pregnancy: Abortion Procedures, Risks, & Side Effects." Yahoo
Voices.N.p., 25 July 2007. Web. 26 July 2013.
Samantha*. E-mail interview. 6 July 2013.
Breanne*. E-mail interview. 6 July 2013.
Cortez. Personal interview. 6 July 2013.
Davenport, Mary L., M.D. "Is Late-Term Abortion Ever Necessary?" Pro Life OBGYNS. N.p., 2010. Web. 26 July 2013.
"Facts about Anencephaly." Centers for Disease Control and Prevention. N.p., 26 Mar. 2013. Web. 7 July 2013.
Rick*. Personal interview. 20 July 2013.
Jalsevac, John. "Pope Requested Baby Whose Parents Rejected Abortion Be Presented during Offertory at Final WYD Mass." Life Site News. N.p., 29 July 2013. Web. 29 July 2013.
Jaquier, Monika. "Frequently Asked Questions about Anencephaly." Anencephaly.Info. N.p., 16 July 2013. Web. 20 July 2013.
Janvier, Annie, MD, PhD, Barbara Farlow, BEng, MBA, and Benjamin Wilfond, MD. "The Experience of Families With Children With Trisomy 13 and 18 in Social Networks." Pediatrics. N.p., 17 Apr. 2012. Web. 7 July 2013.
Mayer-Whittington, Nancy. "‘Incompatible with Life’ Is a Judgment Not a Diagnosis." Life Site News. N.p., 30 Jan. 2012. Web. 30 July 2013.
Mary*. E-mail interview. 6 July 2013.
"Neural Tube Defects." Duke Center for Human Genetics. N.p., 2005. Web. 7 July 2013.
Obeidi, N., N. Russell, JR Higgins, and K. O'Donoghue. "The Natural History of Anencephaly." Pub Med. US National Library of Medicine National Institutes of Health, 30 Apr. 2010. Web. 27 July 2013.
"Organ Donation Law." The Free Dictionary Legal Dictionary. N.p., 2013. Web. 26 July 2013.
Peterson, Hayley. "Congresswoman's Newborn Is First Baby Ever to Survive Fatal Pregnancy Condition Which Means She Was Born with No Kidneys." Mail Online. N.p., 29 July 2013. Web. 29 July 2013.
"Potter Syndome." Medline Plus. N.p., 2 Aug. 2011. Web. 26 July 2013.
Jamie*. Message to the author. 27 July 2013. E-mail.




*Names have been changed to protect the privacy of families who shared their story for this paper.

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