When giving expectant parents a diagnosis, please keep these suggestions in mind.

 

§  A doctor who already has a relationship with the mother should give the diagnosis, if possible. The news should be given in person instead of over the phone. Preferably, both parents would be present so the mother does not have to retain and repeat all of the information alone.

 

§  When giving the diagnosis, do not give a definitive prognosis for the child. Much like the autism spectrum, there is a wide range of outcomes for children with spina bifida, and it is impossible to predict exactly how the child will be affected. Give parents the best case scenario and worst case scenario and explain that their child will probably fall somewhere in between.

 

§  As soon as possible, refer the patient to appropriate specialists, such as a perinatologist, pediatric neurosurgeon, neonatologist, spina bifida clinic, and/or genetic counselor.

 

§  Assure the mother that this is not her fault. Although research has shown that folic acid can decrease a woman’s chance of having a child with spina bifida, the exact cause of spina bifida is not known. Many women who take folic acid still have a child with spina bifida, and most women who do not take folic acid still have healthy children. It just happens, and it is no one’s fault.

 

§  Give parents all their options, but be very careful to not give your opinion about what the parents should do or emphasize only one of the options. In addition to continuing or terminating the pregnancy, important options to consider are intra-uterine surgery (MOMS trial) and adoption.

 

§  Choose your words carefully. This will likely remain in parents’ minds as the worst day of their lives, and your words will echo in their memories.

 

 

Many babies born with spina bifida are stillborn or do not survive early infancy.

Actually, the chances that a fetus with an isolated neural tube defect will be stillborn is 5% or less. It is difficult to be precise when discussing the chances that a child born with spina bifida will not survive the first weeks or months of life because treatment of this condition is constantly improving and people with spina bifida are living longer, healthier lives. Information published by the Centers of Disease Control and Prevention shows that from 1989 through 1994 (the most recent years for which information is available) 91% of babies born with spina bifida survived the first year of life. This is for all babies born with spina bifida, even those with additional medical problems.

 

Individuals with spina bifida die at a young age.

Again, it is difficult to give exact information when discussing the life span of people with spina bifida, because of the continuous improvements in treatment which have greatly extended their life expectancy. At this time we cannot be more specific than to say that most children born with spina bifida will survive at least into early adulthood, but many say that children born with spina bifida today have typical life expectancy.

 

Most children with spina bifida have severe intellectual disabilities.
Children with spina bifida are all individuals and cover the usual broad spectrum of human development and achievement. While factors such as a shunt infection or an episode of respiratory arrest can significantly adversely affect the intellectual outcome of children with this condition, most people with spina bifida have normal intelligence. Regardless of IQ, most children with spina bifida do have specific learning challenges and some require special education services.

 

When the spina bifida defect is covered by a sac the prognosis is better (or worse) than if there is no sac.

Actually, it makes no difference whether or not a sac covers the myelomeningocele defect. The most important factor in determining how much paralysis there will be is where on the spinal cord the opening begins. It is important to remember that when a spina bifida defect is covered by a sac made up of the meninges but not by skin, the defect is considered to be open, not closed, and will need to be treated surgically soon after birth. Only a defect covered by skin is considered closed.

 

If the fetus has the “lemon sign” the baby will be born with a lemon-shaped head.
It is important to inform parents that the lemon sign almost always disappears in the third trimester of a pregnancy, with the skull taking on the more usual rounded shape. Babies with spina bifida in whom the lemon sign is seen during a prenatal ultrasound are NOT born with a marked point at the top or front of their head.

 

Prenatal diagnosis is only important for families who will terminate the pregnancy if a problem is found.

There are many valid reasons parents choose prenatal testing to determine if the fetus has any diagnosable abnormalities; terminating the pregnancy is only one such reason. A crucially important reason is to give parents time to learn about their child’s condition and to find medical facilities where their child will be able to get the specialty care they will need.

 

When hydrocephalus is seen on ultrasound the overall prognosis for the child is much worse than if it is not seen.
Actually, the vast majority of infants with spina bifida will develop hydrocephalus, either during the pregnancy or soon after the spina bifida defect is closed after birth. The presence of hydrocephalus in a fetus or infant with spina bifida does not make the case particularly unusual or severe. Most children with hydrocephalus will require treatment with a shunt.

 

The most important thing in determining how a child with spina bifida will do in life is where the spina bifida is located along the spine.

It a mistake to consider only the level of the spina bifida and resulting paralysis when thinking about how an individual will do in life. It is not possible to predict how an individual child with spina bifida will do in life (just as it is not possible to predict that for any child), but parents can make an enormous difference by working with educators to find the educational program that best meets their child’s needs and by letting their child grow, mature and accept responsibilities commensurate with their mental and physical abilities.