Spina Bifida is a birth defect that occurs when the spine and spinal cord do not develop completely in an unborn baby. The resulting opening in the spine leaves the spinal cord and nerves exposed.
That exposure can cause damage leading to paralysis or mobility problems, a buildup of excess fluid on the brain, and infection.
Spina Bifida can sometimes be diagnosed during pregnancy by a blood test, ultrasound or amniocentesis. Sometimes the diagnosis is not made until after birth.
Before the 1990s, treatment for severe spina bifida involved surgery on the baby after birth to close the defect but the procedure could not repair already damaged nerves.
In 1997, the first prenatal surgery was done and in 2011 and 2020, major studies showed that prenatal repair resulted in better outcomes.
But now, in an October 10, 2022 Medscape article “Stem Cell Treatment Helps Babies with Spina Bifida”, a clinical trial at UC Davis Health is showing that a new stem cell treatment-given while the unborn baby is still in the womb-appears to be effective at reversing paralysis and other problems caused by spina bifida in newborns.” (Emphasis added)
But, as the article rightly states,:
“The researchers have expressed caution about drawing full conclusions so far, but the treatment appears promising. They plan to release information about how the babies are doing at developmental milestones throughout the study process.” (Emphasis added)
The clinical trial started in 2021 and involves myelomeningocele, “a severe form of spina bifida where the spinal canal doesn’t fully close before birth, leading to spinal cord damage.”
According to the article, “So far, three babies have received the unique treatment, which is delivered while a fetus is still in the womb.”
DIAGNOSIS AND TREATMENT
Today, prenatal testing is routinely offered to pregnant women, but abortion is too often offered or recommended when prenatal testing shows a possible adverse diagnosis like spina bifida.
According to the Spina Bifida Association, the condition can often be diagnosed before birth:
“There are 3 tests, but, it is important to remember that no medical test is perfect and the results are not always 100 percent accurate. Spina Bifida can be detected in utero by one of the following tests:
- A blood test during the 16th to 18th weeks of pregnancy. This is called the alpha-fetoprotein (AFP screening test). This test is higher in about 75–80 % of women who have a fetus with Spina Bifida.
- An ultrasound of the fetus. This is also called a sonogram and can show signs of Spina Bifida such as the open spine.
- A test where a small amount of the fluid from the womb is taken through a thin needle. This is called maternal amniocentesis and can be used to look at protein levels.”
Ironically, one of the big health institutions in my city that provides “Pregnancy termination for women choosing to terminate a pregnancy due to fetal abnormalities or maternal health conditions” also has a Fetal Care Center that uses prenatal surgery not only for spina bifida but also for other conditions such as amniotic band syndrome, twin-to-twin transfusion syndrome, airway/trachea obstruction and blocked urinary tract, etc.!
When I had my last child in 1985, I was offered but refused amniocentesis. In my case, it was offered because I had previously had Karen, my daughter with Down Syndrome and a severe heart defect.
I knew that both procedures carry a risk of miscarriage and that I would never abort a child because of a disability. I also knew that such procedures can only test for some of the thousands of known “birth defects” and I personally met families who were erroneously told that their child had a defect but were born healthy. I also knew how to find help if any of my children-born or unborn-had a possible health a problem.
Some people asked if I was brave or stupid. I told them that I was just well-informed after researching both amniocentesis and CVS (Chorionic villus sampling)
(Today, we have routine non-invasive prenatal screening blood tests called NIPTs but the Federal Food and Drug Administration issued an alert on April 19, 2022 “Genetic Non-Invasive Prenatal Screening Tests May Have False Results: FDA Safety Communication:
“While health care providers widely use NIPS tests, none have yet been authorized, cleared, or approved by the FDA. The accuracy and performance of NIPS tests have not been evaluated by the FDA and these tests can give false results, such as reporting a genetic abnormality when the fetus does not actually have one.” (Emphasis added))
But most importantly, I told them that my daughter Karen was a blessing who helped change many lives for the better during her tragically short life-especially mine.
After Karen died, I became a volunteer babysitter for many children with a range of disabilities and their parents also told me how they became better people because of their child with a disability.
Life must be our highest priority!