Why OBs are so negative and uniformed. . .
So I just finished writing the final slide, “The History and Future of Spina Bifida” for the homepage slideshow. Though it took me *forever* to finish, it was a fascinating journey. And I want to share one of the things I learned.
So why *IS* the mainstream medical community so outdated, misinformed and negative about Spina Bifida? Why do OBs still portray Spina Bifida as a “worst case scenario” and recommend termination? Well the story dates back almost fifty years to 1967.
Before the 1960s, the timing of back closure surgery was evaluated on a case by case basis. Some children’s backs were closed immediately, while others were forced to wait for months and even years. In 1967 a panel of doctors conducted a study where they looked at 522 cases of myelomeningocele to evaluate timing protocols for back closures. As a result of the study it was determined that the best outcomes came with immediate closure.
But one of the doctors on the panel changed his mind based on what he perceived as “poor quality of life.” This began an almost 30 year debate over both right to life and quality of life issues. This doctor recommended euthanasia (by withholding food and medicine) for all but the most promising cases of Spina Bifida. And his protocols became widely adopted internationally for almost 20 years. Many doctors refused to follow these protocols, giving the patients food and antibiotics, but these patients were still refused proper treatment for their Spina Bifida related conditions. Those who lived went on to truly have “poor quality of life,” only reinforcing these ideas among the medical community.
It wasn’t until the 1980s that immediate spinal closure surgery became the standard protocol. In the years that followed, medical advancements and better screening protocols dramatically improved prognoses for those born with myelomeningocele. Because technology and treatment options were changing so fast, it was difficult to keep up. Apart from the doctors directly involved in the actual care, the strong pessimism among the medical community remained.
It wasn’t until two doctors involved in the MOMs study got fed-up with the misinformation being presented by OBs & MFMs that things started to change. These doctors, Bruner & Tulipan published an editorial in “Ultrasound in Obstetrics & Gynecology Journal,” entitled “Tell the Truth About Spina Bifida.”
This article is both educational and motivational. It gave me statistics I wish I had been told at my diagnosis and made me want to stand up and say, “Take that, OBG!”
I highly recommend that everyone go read it. Here are a few excerpts.
From the into, “‘To date we have met and held intense conversations with more than 150 pregnant women and their partners [diagnosed with spina bifida]. Many times, couples admitted, the initial counseling they received from their obstetrician was slanted—both against disability and toward termination of pregnancy. What they remembered was how the initial obstetric consultation portrayed as grim a picture as possible about their future child’s prognosis. Their fears were about mental deficits, “mental retardation”, paralysis, and their ability to manage the obvious challenges. All were vulnerable to anxiety, guilt, shock, anger, and grief.’ Physicians who routinely tell pregnant women that their fetus with spina bifida will be mentally retarded, never walk, and suffer bladder and bowel incontinence are ignoring a wealth of recent literature that contradicts this stereotype. Most of these children are intelligent, adaptable and able to function well in society.”
And from the statistics on ambulation:
“Perhaps the greatest concern expressed by prospective parents of a fetus with spina bifida is whether their child will ever walk. In a 25-year follow-up of 71 patients treated at birth in an aggressive, non-selective manner, Bowman et al. observed that 46% of young adults (33/71) ambulated the majority of the time (75–100%). An additional 13% (9/71) ambulated 25–50% of the time. Forty-one percent (29/71) ambulated only with the aid of a wheelchair. When stratified by lesion level, patients with lower defects were more likely to ambulate the majority of the time. Ninety-three percent of patients with a sacral lesion (14/15) ambulated 100% of the time. Ninety-one percent of young adults with an L5 level lesion (10/11) ambulated 75–100% of the time, as did 57% of patients with an L4 lesion. In contrast, no patient with a lesion level of L3 or above ambulated the majority of the time.”
And finally from the conclusion, “As Bliton and Zaner observed, ‘From our discussions with these women and their partners, we came to recognize that ultrasound diagnosis of spina bifida was a momentous event for them that evoked a potentially devastating set of experiences’. Healthcare providers should not allow their own lack of knowledge to magnify their patients’ fears of delivering a crippled child. We urge all those involved in prenatal care to learn the facts, and tell the truth about spina bifida.”
And to that I say Amen!