Informed Consent Research Paper

I wanted to share my research paper that I did for my English class this summer. This is obviously a very personal story for us and for our dear friends, but wanted to share what came out of a whole lot of research. This is not meant to start a debate, only to share my own personal experience.



Jenny Davidson
Professor Frank West
English 1A
26 July 2007
Informed Consent

Bursting with joy, my husband and I were expecting our first child together. Charles would read his favorite childhood stories out loud every evening to my growing belly. We heard all about Winnie the Pooh and Rabbit and their adventures in the hundred acre wood. On a cold night in December, having just gone to see a movie as a family, we arrived home to hear the familiar beeping of the answering machine. The message was from our geneticist. Giving us her home number, she asked us to call her back if we were home by nine thirty. We glanced at the clock it: was nine fifteen. We went to our bedroom to get the information that would change our lives. “Your unborn son has a condition called Trisomy 18 (t18). You need to call your obstetrician first thing in the morning.” We had done the research; we knew what Trisomy 18 was. Our son, Jordan, had an extra copy of the 18th chromosome. This condition is much like Down’s Syndrome in which the baby carries an extra copy of the 21st chromosome. Babies born with Trisomy 18 often have extreme birth defects, however we knew from Jordan’s ultrasounds that he did not have any major birth defects. Statistics would suggest that our son had only a ten percent chance of living to his first birthday. After a night of crying, we called our doctor at exactly nine o’clock. The receptionist said she would have our doctor call us back. We waited by the phone. Ten, eleven, twelve, and one o’clock came and went without a call. Finally at two o’clock in the afternoon our doctor called us. She confirmed that she had gotten the same news we had. Her first words to us were, “When can we schedule the termination?” My quick reply was, “That is not an option we are considering. When can we come in to discuss a plan to give our son the best chance at life?” Our obstetrician said that if we were not considering termination, she would do nothing to help us meet our son alive; no more ultrasounds, no non-stress tests, and no care for the pregnancy. She continued, “It is just a pointless non viable fetus; it is just going to die anyway.” We found even less support when we searched for a pediatrician willing to help us after the birth of our son. We exhausted our phone book in search of a pediatrician willing to treat our son. Finally, a coworker spoke to her husband, Dr. Craig Traugott, Head of Pediatrics for Mercy Hospital, and he agreed to take Jordan on as his patient. Because of his position at the hospital he doesn’t usually take on individual patients. However, being a pro-life doctor, he wanted to do all he could to give Jordan the best chance at life as possible. We met with Dr. Traugott a few weeks before Jordan’s birth and established a care plan for his life. We wanted to do all we could to meet him alive, while doing all we could to avoid pain or suffering. We established a “Do Not Resuscitate” code. We wanted to give him every chance at a pain free life, while not forcing him to go through painful resuscitation methods. The important thing is that we were finally given the information and the opportunity to make the choices for ourselves. Medical professionals swear the Hippocratic Oath; stating they will “Do no harm.” However, frequently they refuse to treat children based solely on their genetic handicaps. They refuse to inform parents of options for the care of their children. Doctors must be required to present patients with all of the information and choices available to them, and allow them to take the course of action they feel is best, regardless of their abilities, strengths or age.


“The history of infanticide stretches across almost every culture, race and geographic location. In ancient times, the reasons for infanticide were economic – families who were unable to afford the extra mouth to feed or dowry, population – families required to have only one child, societal – gender control or interracial secrets hidden, parental mental illness, or if a child was born with a disability.” (Wikipedia) Many people reading this historical account would be horrified at the practices of our ancestors. They may even be proud that our civilization has come so far; however, if they took the time to research they may be shocked to find out that this practice still happens today, in our country and around the world.


In ancient times the methods used for infanticide were barbaric: leaving the infant to death by exposure and severe malnourishment. We as humans cannot help but shutter at the cruelties of our past; if only these atrocities had been left in the past.


The Society for the Prevention of Infanticide reports, “The frequency of infanticide has dropped significantly since 1968. The legalization of abortion has had a large impact on the statistics of infanticide” (Milner). The Supreme Court upheld the Partial Birth Abortion Ban Act in a ruling on April 18, 2007 (Gonzales v Carhart). This law made it illegal to take the infant’s life while it is still in the birth canal. However, it did not establish any law against inducing labor while an infant is still living, yet too young to survive outside the womb. Infants diagnosed with genetic anomalies continue to be prematurely delivered and allowed to suffocate with their underdeveloped lungs gasping for air.


In his book, Playing God in the Nursery, Jeff Lyon tells the story of “Baby Doe.” Good Friday is a day set apart by Christians to remember the day that Jesus Christ was crucified on a cross. Good Friday, April 9, 1982, was also the day that changed medical treatment for disabled newborns; “Baby Doe” was born in Bloomington, Indiana. This baby boy was born to two former school teachers. The doctor who delivered him noticed right away that this baby had medical issues requiring immediate care. The baby was rushed to a pediatrician for evaluation. The baby boy was diagnosed with Esophageal Atresia; atresia meaning “absence”. An esophageal atresia is a condition in which the baby’s esophagus fails to develop normally during the months of pregnancy. The net result is one of a washed out bridge. The other end of the baby’s esophagus was hooked directly into his windpipe. Left untreated the baby would soon die of starvation, pneumonia, and thirst. While the pediatrician involved fought for the child’s right to a very simple surgery to correct these conditions, the family’s obstetrician encouraged them to allow nature to take its course, saying, “There are things worse than having a child die. And one of them is that it might live… If you let the baby die you are going to grieve for a little while, but if you go ahead with this surgery, you are going to grieve for the rest of your lives” (Lyon 25). You may be asking yourself why a medical professional would be so against a relatively common, safe, corrective surgery that could save this baby’s life; Baby Doe was also diagnosed with Down’s syndrome (Lyon 22-30).


Doctors are given the freedom to withhold medical life saving treatments that will save or prolong the life of a newborn child based simply on the disability of the child. As in ancient times doctors continue to allow disabled newborns die by exposure and starvation. Infants with conditions such as Trisomy 18 (Edward’s Syndrome) and Trisomy 21 (Down’s Syndrome) are induced, delivered alive prematurely and are denied medical care, oxygen, food and water. Many infants are born with minor birth defects such as dysphagia or difficulty swallowing. This condition can easily be treated by temporarily feeding the infant with a feeding tube until the baby is old enough to develop that skill. Doctors are very reluctant to give such a simple treatment for a child with a chromosomal disorder. Most doctors will either not offer this treatment to the family or will even go to the extent of denying the treatment even after the family has requested it. A child born with severe dysphagia, which is common in a child with a Trisomy, left untreated, will die within hours. According to Medicine Plus, a service of the U.S. National Library of Medicine and the National Institutes of Health, “Life sustaining treatments are not recommended. The abnormalities of Trisomy 18 are generally not compatible with more than a few months of life. Fifty percent of the affected infants do not survive beyond the first week of life.” They admit that “Many children have survived to teenage years, but usually with marked handicaps.” And “Complications depend on the specific abnormalities that affect the infant.” (Sondheimer)


Harold Chen, MD, Chief, Professor, Department of Pediatrics, Section of Perinatal Genetics, Louisiana State University Medical Center gives the hope that if better medical care were offered to newborns with Trisomy 18 we would begin to see the statistics of early death fade. Until 1940, children born with Down’s syndrome were commonly given little to no supportive medical care. In 1975, The National Institutes of Health established new guidelines for the care of children with Down’s syndrome. Since then, a once fatal diagnosis has been given new hope. People with Down’s syndrome are now living into their 50s and 60s (Chen). Even with this newfound hope, infants continue to be starved and offered few if any neonatal medical interventions. One reason cited by the National Institute of Child Health and Development is the stress placed on families who care for disabled children. However, parents of disabled children who have received the miracle of time with their living children I have met since our loss, unanimously agree that the time they have with their children is a miracle and a gift. I have spoken to hundreds and have yet to meet even one parent who feels they would have been better off to have never experienced the life of their disabled child.


Reuters News reported this week that a man diagnosed with hydrocephalus as an infant and given little chance at survival is living a full healthy life. Now 44-years-old, this man is a civil servant, married, and father of two children. He recently went to the doctor for a routine check up and they ran a full battery of tests. His skull is mostly filled with fluid leaving only a thin sheet of brain tissue. Despite this medical condition, the man continues to live a full life. This man is very lucky to have been born 44 years ago. He was given a shunt at birth that was removed when he was 14-years-old. He has had no medical interventions since. An infant born with this same condition today would not be given any medical interventions and would be allowed to die a painful premature death (Reuters).


Families who receive a prenatal diagnosis of Trisomy 18 are given little to no information or help. The two resources we were able to find on our own were a pamphlet of information on Trisomy 18 and the online support website for families of Trisomy 18 babies. The pamphlet “Information about Trisomy 18” written by Kim Rittenhouse, M.S., Ph. D., and reviewed by a panel of medical professionals, contains the following statistics; 80% of babies with Trisomy 18 are stillborn and of those born alive at least 90% will not live to their first birthday (Rittenhouse). The Trisomy 18 support website for families affected by Trisomy 18 shows that 75% of families will induce labor as a form of termination of a Trisomy 18 fetus and provide no medical care to the premature infant if unintentionally born alive. Of those who carry their baby to term, very few are offered any medical care for treatable medical issues (Trisomy 18 Support). Their babies are simply allowed to die. During my pregnancy, I frequently wondered, are these statistics self fulfilling? If parents and the medical community stopped killing these babies and instead gave them the best medical care possible, could Trisomy 18 babies surprise us all?


Precious few newborns with Trisomy 18 are given the chance to have adequate medical intervention. Many of these children are shattering the statistics and surviving months and even years, learning to laugh, speak, walk and play. It is the hope of many parents of children with Trisomy 18 that medical professionals will stop allowing them to die due to lack of basic medical intervention, and begin to attack the symptoms that prevent the newborn from living long enough to become stable. Cathy and Brian Zinck welcomed their daughter Grace Zinck on October 27, 2003. Grace has Trisomy 18. She is, however shattering every statistic the doctors used to scare her parents. She is now three years old and is walking, potty trained, talking, and speaks in sign language. She does have some disabilities but lives a very full happy life for a three year old girl.


In an interview with Sharon Gorvett she told me of the story of her time with her daughter, Sophie Gorvett.

When I went for my 20 week ultrasound and they discovered Sophie had a heart
condition (we didn't know Sophie had t18 at that point). The cardiologist said
that Sophie's heart condition was operable but if it showed she had t18 or t13
then no surgery would be offered. That's what we were told, no discussion, no
questions about how we felt or what we wanted. When t18 was discovered the ob
just assumed that I would want a termination. I found out later, by sneaking a
look at my records, that a 'slot' had been booked for this. They couldn't have
been further off the mark. The radiologist also told us that Sophie would die
before being born, while being born or soon after birth. It wasn't mentioned
that Sophie could well survive for some time, that 10% of these children do
survive beyond the first year of life. I was also told that if Sophie didn't
breath spontaneously she wouldn't be intubated or put on a ventilator, again
against our wishes.
When Sophie was born, the neonatologist told me that
should she develop any kind of infection then she would not be given any
antibiotics, I refuted this and they agreed that they could be given if needed.
Sophie never needed any antibiotics.
They continued to refuse Sophie heart
surgery even though we asked for it every chance we got. We were told that
babies with t18 do not survive anesthetic! that she would have to weigh over 4
kg, many excuses were given.
She was so strong and I believe to this day she
would have survived had she been given the chance. Sophie having t18 didn't kill
her, the heart failure did because of the medics refusal to help her.
I loved and still love Sophie with all of my heart. The fact that she had t18 made
no difference to the way I felt and still feel about her. She was and is my
daughter, my flesh and blood and I love her just as I love my other children.

The information I was given prior and after Sophie's birth was inaccurate or just not given at all. I had to find out for myself by looking at websites and talking with others in my situation.
Sharon’s daughter, Sophie survived for twelve weeks.


Nicole Konicke experienced similarly harsh treatment from the medical community. Her daughter, Ella Rose Konicke, was born alive in July of 2005, diagnosed with Trisomy 18. Ella’s only presenting medical condition at birth was jaundice. The neonatologist refused to allow Ella to receive the common bilirubin treatment for her condition. He said that it was a waste of time and money. Ella’s parents were forced to hold her naked near windows in order to give her direct sunlight to treat her jaundice. Ella lived for ten weeks.


Physicians argue that these decisions are difficult for them to make even after years of medical school. They say that parents do not have the time or opportunity to explore all medical information, risks, and benefits involved in pursuing aggressive medical treatment for their disabled child. It is true that parents do not have time to complete medical school and gain a full and complete knowledge of their child’s condition, but that is true of any medical procedure, and when the patient is a child without disability, physicians will fight for a full and complete treatment plan. The debate on this issue is not whether or not a parent has time to fully understand the medical issues at hand; the question we have to answer is; “Are all children, regardless of their chromosomal make up, entitled to equal medical care?” What is next? Will we offer full services to only male infants? Infants with blonde hair and blue eyes? Who is to say which children are worthy of aggressive medical care?


Despite the initial urging of our obstetrician to terminate our pregnancy, we chose to carry our son, Jordan, for as long as we could. This meant that we had to find an obstetrician willing to help us to meet him alive. We found a miracle in our new doctor, Rene Williams. Not knowing if we would get the chance to see Jordan alive, Dr. Williams allowed us to have extra ultrasounds in order to spend time with our son and get lots of photos and video of him alive. At 32 weeks pregnancy, Jordan began to have heart decelerations. Jordan was born by emergency cesarean section on March 10, 2005. Weighing only two pounds, six ounces, Jordan was born alive. We were gifted with 32 precious hours with our son; we held him, kissed him, talked to him, and then said good bye. That gift of time was the most precious gift we could have ever hoped for. After his death we established a website in his memory to encourage other parents who receive a prenatal diagnosis of Trisomy 18. This website can be found at http://jordan.newlifeshasta.com/index.php. Since the website went online in March of 2005, we have had over 17,000 unique visitors from over 60 different countries. His website continues to grow in popularity. The busiest month yet was June of 2007, seeing 906 new visitors. The German Wikipedia sites Jordan’s website as a resource for Trisomy 18 (Wikipedia). We have received countless emails from families who were given no hope of meeting their child alive. These families found our website and received hope and continued their pregnancies. Many were given the gift of time with their infants. Some only a few hours, some days and still others are still living. Jordan only lived for 32 weeks inside of me and 32 hours in my arms, yet he is still changing lives today.


Parents of disabled children must be given all of the information necessary to make informed decisions regarding the care of their children. Doctors should not be allowed to make unilateral decisions on which children are given the opportunity to live, and which children are not. Medical professionals are given too much power when they are allowed to choose an early death for a child who could survive much longer with very minor interventions. Doctors must inform families of all medical choices available and allow them to take the course of action they feel is best for their child, regardless of their abilities, strengths or age.


Works Cited
Chen, Harold MD, MS, FAAP, FACMG, Chief, Professor, Department of Pediatrics, Section of
Perinatal Genetics, Louisiana State University Medical Center http://www.emedicine.com/ped/topic652.htm

Edward’s Syndrome. Wikipedia. 13 July 2007. < http://de.wikipedia.org/wiki/Trisomie_18>

Gorvett, Sharon. Personal Interview. 11 July 2007.

Infanticide. Wikipedia. 12 July 2007. http://en.wikipedia.org/wiki/Infanticide

Lyon, Jeff. Playing God in the Nursery. New York: W.W. Norton and Company, 1985.

Konicke, Nicole. Personal Interview. 10 July 2007.


Milner, Larry S PHD. “A Brief History of Infanticide”, Society For the Prevention of Infanticide.
1998. 12 July 2007. http://www.infanticide.org/history.htm

National Institute of Child Health and Development. 18 August 2006. 11 July 2007.
http://www.nichd.nih.gov/publications/pubs/downsyndrome.cfm

Rittenhouse, Kim M.S., Ph.D. Information about Trisomy 18. 2001.

Sondheimer, Neal M.D., PhD Medicine Plus, a service of the U.S. National Library of Medicine
and the National Institutes of Health
http://www.nlm.nih.gov/medlineplus/ency/article/001661.htm

Tiny Brain No Obstacle to French Civil Servant. Reuters News. 19 July 2007.
http://www.reuters.com/article/scienceNews/idUSN1930510020070720

Trisomy 18 Support. 2005

United States Supreme Court. Gonzales, Attorney General v. Carhart; Planned Parenthood

Federation of America, Inc., et al. 18 April 2007. 12 July 2007.