Information for Parents of Children with Cerebral Palsy

Misinformation: Children rarely develop CP from asphyxial injuries to the brain during the intrapartum period. The American College of Obstetricians and Gynecologists claims that several studies support the conclusion that only four percent of CP results solely from asphyxia during labor.

Reality: The studies on which ACOG relies are inferior and unreliable. Even if the scope of the inquiry were limited to instances of CP where intrapartum asphyxia is the sole cause as opposed to the primary cause, the actual percentage would be approximately three times greater. According to Joseph J. Volpe, M.D., Harvard professor and Neurologist-in-Chief at Boston’s Children’s Hospital, if all term infants are considered, the percentage of children who develop CP from intrapartum asphyxia is “approximately 12 to 23 percent” which equates to “a large absolute number of infants.” Dr. Volpe concludes, further, that the “tendency in the medical profession to deny the importance or even the existence of intrapartum brain injury” is “particularly unfortunate,” and may well be impairing progress in CP prevention.

Misinformation: Electronic fetal monitoring has not reduced the number of children who develop cerebral palsy.

Reality: This false claim fails to take into account today’s enhanced survival rates of premature infants. Nationally renowned maternal-fetal medicine specialist Richard H. Paul, M.D., who is one of the pioneers in EFM, and other experts have testified to the inaccuracy of this claim in malpractice trials brought by parents who contend that their children’s cerebral palsy was caused by medical error.

In the days before EFM and recent medical advancements, doctors lacked the expertise and technology to save many premature babies; generally, efforts made to save infants weighing less than three pounds were tragically unsuccessful. Today, infants of a pound or less receive active treatment and life support, and routinely survive. These premature infants represent a substantial number of the children born with CP. Yet, despite the addition of these preemies to the survival pool, the total number of infants born with CP has remained constant.

If the number of surviving premature babies who develop CP has significantly increased, but the total number of cases of CP remains the same, then the number of full-term infants that have CP must have declined. Many infants who otherwise might have developed CP have escaped an unfortunate fate because EFM was used properly during labor and delivery.

Misinformation: Obstetricians disagree so widely in their interpretation of EFM tracings that standards for interpretation and appropriate action in response to a particular EFM pattern do not exist except in the face of tracings that are perfectly normal or extremely and obviously abnormal. This contention is primarily based on three studies.

Reality: These studies are unpersuasive and outdated, with one being more than 23 years old and each involving no more than five obstetricians. For many years, highly qualified obstetricians from all over the country have testified in medical malpractice cases that standards of care indeed do exist for the interpretation and management of various EFM tracing patterns that fall between those two extremes.

In connection with a medical malpractice lawsuit brought by a Minnesota mother whose child developed CP as a result of intrapartum asphyxia, a medical article was uncovered that shed light on at least one reason why doctors resist establishing written standards for the interpretation and management of the so-called in between patterns. “Providers have traditionally been hesitant to codify guidelines for managing FHR [fetal heart rate] pattern tracings. The reasons commonly cited include¼fears that written guidelines will be used to scrutinize clinical practice in a court of law.”

When EFM patterns provide evidence of impending fetal asphyxia, such patterns need not reach the extremely abnormal level before immediate action, such as expedited Caesarean delivery must be taken. Yet, because medically sanctioned literature suggests that less-than-extreme EFM tracings don’t necessarily require intervention, many otherwise healthy babies sustain intrapartum brain injuries and are subsequently diagnosed with CP.

More Misguided Priorities
As much as parents would like to believe that the best interests of mother and baby are always the first priority of the doctors and nurses who treat them, unfortunately, other considerations possibly come into play. According to the Association of Women’s Health, Obstetrics and Neonatal Nurses (AWHONN), nurses may hesitate to document a physician’s conduct in the medical record for fear those notes will end up in the courtroom: “[Nurses] are usually told by risk management personnel not to ‘advertise’ potential conflicts in the medical records and thus some nurses may be unwilling to memorialize an unsuccessful interaction with a physician¼Nurses may choose to affirmatively protect the doctor by not documenting an inappropriate or untimely response in the patient’s chart.”

Once parents like you learn that even a publication of a professional nursing organization notes that its members are cautioned against documenting potential medical errors, you will realize the gravity of this matter and the importance of researching these issues.

A Call To Action
Significant numbers of highly qualified, respected physicians have concluded that many cases of cerebral palsy can be prevented through the judicious use of electronic fetal monitoring. Their position is supported by recent medical studies that have established a distinct relationship between certain fetal heart rate patterns and poor neurological outcomes in infants up to a year after birth.

And while there may be no universally agreed upon set of terms to describe actionable EFM pattern characteristics, it is clear that doctors know a great deal about the patterns that foreshadow CP and other poor neonatal outcomes. By using EFM in 85 percent of all labor and delivery rooms nationwide, the medical community already has acknowledged EFM’s value. Now, medical leaders should take action to adopt clear-cut written protocols concerning the interpretation of EFM tracings and appropriate interventions. Doing so will help reduce the number of errors made in connection with interpreting and responding to EFM tracings.

Health care organizations that promote better patient care should develop formalized classes and seminars that focus not only on easing the mother’s pain, but also on educating parents-to-be about EFM and other matters that will help them to be proactive in their health care.

These are complex, technical subjects, and some may be difficult to research, but accurate information is available. There really are standards, even if they have not been reduced to writing or codified by the obstetrical community. You, as parents, must do the research necessary to learn more about EFM and its value in the labor and delivery rooms.

Remember, knowledge is power.

As I travel across the country representing parents of children with CP, I’m often asked, “Is there anything I could have done?” Second-guessing themselves only adds to the agony for these parents. I tell them, “No, there’s nothing you could have done.” A mother and father who have given themselves and their unborn child over to the care of professionals should never be held accountable for what happens in a labor and delivery room.

But, what they can do to help someone else avoid what happened to them—or to reduce the risk of the tragedy reoccurring in their family—is an entirely different matter. Learning a few basics of EFM is not difficult. It is imperative to recognize significant fetal heart rate decelerations (dips below the baseline rate) in the fetal monitor tracings. You must also understand the relationship of decelerations to contractions. Isolated decelerations of short duration (less than 30 seconds) generally are thought to be inconsequential. However, if certain types of decelerations become repetitive or prolonged, this could mean your baby is not being adequately oxygenated. You should also realize that the presence of variability (the second-to-second and longer-term jagged lines or variations in the fetal heart rate tracings) is usually re-assuring. On the other hand, decreased or absent variability can be foreboding.

Armed with sufficient knowledge, you will be able to question your health care providers intelligently. Some AWHONN publications provide easily understandable information about EFM patterns. Well-founded questions will spark your health care providers to be more attentive to your care and that of your unborn baby.

Other important proactive measures that parents should take include:

• Help dispel the myth that CP rarely results from intrapartum asphyxia. It only hampers prevention efforts.
• Encourage expectant couples you know, especially those with high-risk pregnancies, to learn about EFM.
• Be sure that your health care providers have the appropriate training, certifications, and experience necessary to properly interpret fetal monitor tracings.
• Make sure your labor and delivery health care providers know you want to be informed about evidence of reduced fetal oxygenation and interventions that are being considered.
• Confirm that an obstetrician and anesthesiologist are in-house and available to respond in an emergency situation.
• Understand the chain of command in the hospital so that if you feel your concerns are being ignored you have an alternative source for an opinion and intervention.

The message for parents-to-be: Get proactive about your pregnancy and delivery. Move past the curriculum of Lamaze classes. Learn about more than how your baby is developing in the womb. Educate yourselves about EFM, and learn the right questions to ask about how your baby is being monitored during labor and delivery.

Because there really is only one certainty and it is this: No one—no one—cares as much about your child as you do.

Howard A. Janet is a principal in the law firm of Janet, Jenner and Suggs, LLC which concentrates in the area of birth injury litigation. Giles H. Manley, M.D. (Board Certified Obstetrician), J.D., an associate of the firm, also contributed to this article. Questions regarding this article should be directed to the authors through www.cpalert.org.

(©copyrighted 2005, All Rights Reserved)

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