If you are reading this book right now, you have recently been through a lot. Maybe your first trimester “quad screen” blood test came back with an abnormal result and they scheduled you for a level 2 ultrasound. Maybe it was at your first ultrasound, when you were excited to learn the gender of your baby, that the technician paused for a while and took lots of pictures of your baby’s head or back and then called in the doctor who delivered the news. Maybe your heart raced. Maybe you cried. Maybe you went numb. Maybe you thought, “There has been some mistake. There can’t be anything wrong with my baby!”
No matter how you got the news. No matter how gently the doctor said the words “spina bifida”, your world stopped spinning for a moment. And that moment: that frightening, breathless, life changing moment is something you have in common with every other parent who has received a prenatal diagnosis of spina bifida for their child. The very first thing you need to know is that you are not alone. Although Spina Bifida, like any birth defect, is rare, as far as birth defects go it is a common one. And it is rarely fatal.
Somewhere beyond the walls of the doctor’s office where you first learned the news, there exists a community of moms and dads just like you who asked the same questions you are asking now. Who cried the same tears and made the same wishes on all the same stars. Right now, they are doing errands, picking up their children from school, coloring pictures, telling a joke, helping with homework, running baths, reading bedtime stories, and all those other “normal” things that it may be hard for you to envision right now. They eventually found answers, just like you will find answers. This book is intended to be a light post for you in a place that can seem dark, scary and lonely. It contains information for what to expect as you continue to go to doctor’s appointments, what your child’s treatment options are, stories from other parents, grandparents, and also from adults who have spina bifida. It won’t answer every question, because the questions of a parent’s heart are many, but it will provide you with a base of information for making plans. In addition to information, perhaps it will provide you with some hope and optimism as well. Things you understand are never a terrifying as things you don’t.
To get the most from this book, try to read it in order. Don’t skip ahead to the chapters you might be most curious about. This book is structured with adult learning principles in mind and builds on information as you progress. This technique makes difficult and complicated subjects more understandable. And, because it deals with such an all-encompassing system as the spinal cord, spina bifida is a complex subject. Most people know very little or nothing at all about spina bifida and this book assumes that you are like most people; it starts at the basics and moves on from there. Also, as you read, please keep in mind that most doctors a woman sees when she first “gets the news” are not at all experienced with the spina bifida diagnosis. OBGYNs treat women, not prenates or children. Many OBGYNs only see a few cases of spina bifida in their careers and because of the scope of their practice, don’t know what happens with the baby after the baby is born. After all, they have a lot of pictures of newborns on their walls, but none of little children. So, don’t expect a doctor who specializes in female reproduction to know a lot about pediatric neurology. He/she will know the basics only. Because of this, and because of a desire for full disclosure, the diagnosing physician will sometimes give a “worst case scenario” explanation about what to expect from babies with spina bifida. Adding to the confusion regarding the information you first received, was your emotional state when you got the news. Nobody thinks or learns well under extreme stress. The doctor may have meant or said one thing and you may have heard something else. This book is NOT suggesting that you forget what your OBGYN or any other doctor says! However, as you read, you are encouraged weigh the information you first received and compare it to more specific information from specialists. Eventually, you will see a doctor who can tell you, not about spina bifida in general, but about your child in particular. There are many places around the country that have specialized equipment and entire teams of people you can talk to at once to get information about what is going on with your child. We will discuss some of these specialty centers in a later chapter about treatment options.
You also need to be aware that your best source individual medical of information will come from a pediatric neurosurgeon. You will see a lot of different kinds of doctors as you progress through your pregnancy and beyond. You will not see the pediatric neurosurgeon often before the baby is born, but he/she will become your greatest knowledge resource regarding your unique case. We will be discussing the kinds of doctors you might be seeing, when you will see them, and what to expect from an appointment with each of them in Chapter Three.
One final note: No one will have exactly the same experience as you because each case of spina bifida is unique. The most honest answer you can often get is often the hardest to hear: “we don’t know.” Uncertainty can be its own kind of hell: an icy one that leaves you feeling cold and frightened. The upside is that even amid the uncertainty there are still some things you can know and can do to prepare yourself. Just remember, your son or daughter is a unique individual and no degree of spina bifida will ever take away how sweet his kisses are nor how soft her chubby, baby hands feel when they latch on to your finger. You child is more than a diagnosis. Your life is more than a series of medical appointments. You may need to remind yourself of those facts from time to time. Something good does come out of this difficult time.
The road to child birth can seem like a very long one when you are facing something that most parents never have to ….but focusing on the prize at the end- that beautiful baby that your body is nourishing, can be the light in the middle of your dark place.
Chapter 1: Looking at your own emotions.
Even as you have questions about what is going on with your baby, It is important to take note of what you are going through personally. Your own emotions will factor heavily into the experiences of the next few months. In order to gain the knowledge you need to know and in order to stay functional in the face of fear you will need to deal with these emotions and not push them aside. In this first chapter, we will look at several emotions that are typical of an individual in a high-stress situation such as the one you now face. You need to know that there are no right or wrong emotions. Having thoughts and experiencing emotions that’d you rather not experience does not make you a bad mom or a bad person. Thoughts and emotions just are. They happen. They are a part of human existence. To acknowledge them does not mean you can ever fully control them, put them aside or “be done with them”. Emotions are not such easy beasts to control. However, by acknowledging them, you are equipping yourself with the tools you need to do battle with them and keep them manageable. Without your wits about you, your emotions will easily overwhelm you and make your daily living seem that much harder.
Many women look back fondly on the experience of being pregnant. They remember how they got complements on their “glowing” skin or how lovely and long their hair and nails became. But most women, if they are honest, also talk about how difficult it was when their feet got swollen, or how embarrassed they felt when they couldn’t get out of their own couch without a helping hand, or even how exhausted they were or how much everything began to hurt. Being pregnant is never easy. It is that much more difficult when things don’t go as planned.
When a little girl gets her first doll, society is preparing her to be a mom and care for the next generation. By the time young girls get to elementary school, most have chosen favorite names to bestow on their imaginary children. During play, they nurture their dolls, caring for them when they are “sick”. They practice enforcing rules, sending poorly behaved dollies to the time-out chair. They send their imaginary children to school, take them to doctor appointments, and ask them to finish all their imaginary vegetables. Once a girl gets to high school or college, playing house may not seem so interesting any more, at least not in the way it was before… but those first ideas of motherhood remain, ready to be embellished at a later time. All that early play, childish or not, translates into what we expect out of parenthood, and out of ourselves as adult members of the family unit. As further maturity happens, and a girl grows into a woman ready to begin her own family, she plans out her life as a mother even more meticulously than when she was younger.
Even if a woman gets pregnant unplanned, she still has some basic ideas about what to expect, and what she wants from the experience. She may have some idea of the kind of activities she wants to do with her child, what kind of school she wants him to go to, what sports she wants him to try etc. All these products of adult imagination can come crashing down when you are told that the child you envisioned doesn’t (or may not) function the way you thought. Using that same vivid imagination employed in childhood, it is easy to picture wheelchairs taking the place of bicycles. You see crutches instead of soccer balls. That swing set in the back yard? You replace it with a place to do physical therapy. The school you wanted to send him to? You now wonder if he will be “smart” enough to go there.
And the imagination doesn’t stop there. Mental images of happy play dates in the park get replaced by ones of your darling baby asking you with teary eyes “mommy, why can’t I run like the other kids?” Your heart breaks into a thousand pieces. Your pulse quickens and fear grabs you as tears run down your face. You ask yourself the same questions over and over, hoping to find an answer for a situation that hasn’t happened and might never happen. At least not like you imagine.
Your imagination is a beautiful thing. If used properly, it will provide solutions to your most puzzling problems. If you let it run wild on you though, it will crush you under an impossible weight of fear and dread. Yes! It is absolutely natural for you to try and imagine what the future will be like. But before you let yourself get too upset with anything you picture, remember that it IS just imagination. One vision of the possible future. A vision impacted strongly not only by your still growing body of knowledge about spina bifida, but also by the level of emotion rising up within you every time you think of it- and if you are like most…you are hardly ever NOT thinking of it. After all, this person is growing inside you. Your food is her food. Your air is her oxygen. It is natural that you want to daydream about how to design the nursery that will keep her safe and warm after she leaves the security of your belly. And it is frustrating that you suddenly feel robbed of the pregnancy experience you planned by having to think of some very difficult and hurtful things. In a perfect world, nothing would be wrong with your baby. Spina bifida would not exist. You wouldn’t have to be afraid.
After all, most women have nothing else to ponder than what brand of stroller they want, what style of tiny clothes to buy, or if they should go with a middle name from her side of the family or his. You obviously have bigger puzzles to solve, and you are using a lot of mental time and energy in thinking them over. Although you will need to devote some mental energy to learning about your son or daughter’s condition, try to limit the way you use your imagination. Especially in the beginning. We will discuss tips for getting a handle on your thoughts more in Chapter 8. For now, just realize that most of what you are imagining is far worse that the reality you face.
Many women who have something go wrong during pregnancy experience feelings of guilt. If you haven’t felt it yet, you likely will at some point. You should know upfront that any guilty feeling you have is not earned. You did not cause this to happen. Most women want to believe that if they eat right and take their vitamins, they are assured a perfectly healthy baby. Truthfully, this is a fantasy. Nobody has that much control over anything. There wasn’t anything wrong you did to cause this. There wasn’t anything “more right” you could have done to prevent it. Folic acid (1) has, for many years now, reduced the number of cases of neural tube defects (2) but it does not totally prevent them. Research shows that taking the recommended dose of folic acid (400 mcg or 0.4mg a day) reduces the occurrence of neural tube defects by anywhere from 20 to 50%. (Boulet, Yang, & Mai, 2008) (Czeizel, 2009). This reduction in occurrence means folic acid does a lot to prevent neural tube defects but it cannot do everything. You will see as you progress through subsequent chapters, that spina bifida research is ongoing. Right now, we know of many contributing factors: Some are genetic and some are environmental. There are certain anti- seizure medications that have been linked to an increase in risk for having a child with a neural tube defect (Wide, Winbladh & Källén, 2004)
There are certain ethnic groups, such as people of Hispanic origin or Irish decent that have a higher incidence of spina bifida (Agopian AJ, Canfield MA & Olney RS et.al, 2011). Catching the flu during early pregnancy can also be a risk-factor ( Lynberg1, Khoury1, Lu1 & Cocian, 1994). Being obese can slightly increase your risk (Shaw, Todoroff, Finnell & Lammer, 2000).
Shoving extra vitamins down your throat is not necessarily the answer, though in some cases it can make a difference. Your child’s spina bifida may have occurred because of another factor or combination of factors. Somehow avoiding that flu virus might not have made a difference. Dropping a few pounds before you got pregnant might also not have prevented the problem. The bottom line is, your guilt unfounded. “If I’d been skinnier or more healthy before I got pregnant…” “If I’d not forgotten my vitamin that day…” “If I ate more vegetables…” All these thoughts begin with the same little word: “If”. Such a nasty little word! It holds every possibility but no actual solution. You cannot go back in time to “fix” whatever happened. And if somebody kindly loaned you a 1988 Delorian equipped with the right machinery to send you back a few months into your past, you would likely have no way of knowing exactly which factor you should change. Spina bifida is what clinicians call “complex”. It is hard to define the exact mix of factors that cause it.
By hanging onto any guilt feelings, you are only kicking yourself while you are down. The words “spina bifida” already knocked you off your feet and punched the wind right out of you. Don’t help the diagnosis keep you on your knees by continuing to kick yourself for circumstances beyond your control. Yes, spina bifida happened. Yes, it sucks. Yes, you may even have some of the risk factors. But does everybody who has your risk factors have a child with spina bifida? No. That’s why they call it a factor. It can be one contributor of many. You owe it to yourself and to your child to drop the self-blame.
Some women report feeling fear their child might blame them, and so they hold onto the guilt. Remember the first part of this chapter? The part about imagination? That mental image of your child blaming you is just that…Imagination! Your child will love you just like anybody else’s child loves them. And yes, your child will eventually grow up, get mad and yell random things at you just like everybody else’s teenager. But to put in it perspective, remember, you will be the one responding to her midnight cries for a bottle. You will be the one to put band-aids on his boo-boos. You will cook her favorite dinner when she’s had a bad day. You will be there to cheer him on at the school spelling bee. You will be the one she shares her secrets with. You will be the one he waves to proudly when he wins.
Then, when your darling little angel hits those pre-teen years, just like any other tweenager, she will probably yell the infamous “I hate you!”. Not because you deserve her displeasure, but because you were a good mother who wouldn’t let her do something that was not in her best interest. You child will likely not really blame you for any of her problems. And if she ever does blame you for anything, it will be because she is just like any other child who sometimes blames mom and dad for irrational things. “I hate this family!” “You guys are so unfair!” “You are nothing like Bobby’s parents! Bobby’s parents are cool!” This is normal, if undesired, adolescent behavior, and there are other books out there to help you with teenaged behavior when that time comes. This book is to help you with the spina bifida part of things, and as for your future child or teenager blaming you for spina bifida, you have no real worries. You just need to focus on not blaming yourself.
Another emotion we should discuss is anger. You will feel that emotion intensely from time to time, and it can be healthy. Anger can give you fuel to fight, and fight is something you will need to do every once in a while. Most parents will tell you that the proper terminology is technically “advocate for your child” and not “fight”, but regardless of how you say it, it means the same thing. One is just done more politely.
Anger can be bad for you too, however, if it is directed toward yourself as a result of misplaced guilt…or directed unjustly at your partner/ close family members. It will be very easy to get mad at your partner or significant other in the coming months. Many marriages and long-term partnerships fail as a result of a stressful situation such as this one. There are some tips for keeping things going smoothly with your partner in Chapter 8.
You are also sure to encounter a lot of uneducated people who will say upsetting things about you, your baby, or about spina bifida in general. These people will make you mad. You may feel the urge to educate them in unkind ways. Still, despite the fact that someone is sure to say something stupid to you somewhere along the line, it is important to be judicious in how you respond. Try to remember that many people mean well and simply don’t know what to say. So, rather than leaving an awkward silence on their end, they say something goofy. If you can, attempt to assess these comments by their intent. Also, try and have an outlet person you can go to. A partner, a parent, a sibling or close friend who understands and who has taken it upon themselves to, like you, become educated about spina bifida. Also, there are several on-line communities dedicated to people with spina bifida and their families (Listed in Chapter 10). These forums can also be wonderful outlets. So, whether it was a nurse at the doctor’s office, an acquaintance in a social group, or stranger on the street who wanted to talk about your belly bump… and you find yourself fuming as a result of conversing with them, go to your chosen outlet person and VENT. Talk it out. Rant it out. Let someone show you some support. It helps.
Lastly, when it comes to anger, sometimes your anger may not have a clear target. You might feel simply “mad at the world” for what you and your child are going through. You might feel angry at people who have healthy babies or at women who are having an “easy” pregnancy. You might feel jealous and ask yourself “why me?” This too is perfectly normal. When you begin to feel this way, you can go to your outlet person to talk. Also, if your doctor has said that it is alright for you to do so, consider taking a walk. Physical activity can not only get your mind off your frustration by giving you a change of scenery, it can also naturally raise your level of “feel good” hormones.
It is natural to feel sad, to grieve as though you have lost something…because you have. As we mentioned before, you are being forced to re-evaluate the way you “always thought things would be.” Although nobody can tell you in utero exactly what your child will and will not be able to do, you may get some idea that your son or daughter will be physically limited. Thoughts of them not being able to play t-ball or go to ballet class may deeply grieve your heart. It is easy to put yourself in your child’s place and ask yourself how you would feel. Left out. Sad. Lonely. Rejected. And you begin to feel the sadness for your child. This is another point to remember: your child is not you. This statement is basic and may seem like common sense, but it is a mistake almost all parents are guilty of at some point. In the beginning, we assume things about our children. Because they are part of us, because they come from us, we make the assumption that they are like us. And sometimes they are. But sometimes they are not. Often parents and children have very different personalities. It eventually becomes obvious however, that children have minds of their own. They make decisions and choices that we would not make for them. Although we may not always agree with our children, ultimately this autonomy is what all parents want. We all want a child who can make sound decisions on his or her own. This level of autonomy is more than attainable for a child with spina bifida. As you will see in chapter 9, adults will spina bifida hold down jobs, have lasting relationships, have children of their own, purchase homes and do all of those self-sufficient things any parent could want.
What parents have to look at to understand why their child may not be as upset as they are about balet class… is the big picture of autonomy. The pain you feel for your child is not the pain she will feel for herself. When a person has an ability and then looses it there is grief over the loss. But somebody who never had something cannot miss it. For your child, whatever he can do is the standard for him. It’s what he will consider normal. He will not grieve in the way you grieve for him. His experience is not necessarily as tragic as you might imagine when you put yourself in his place. As a parent you have the opportunity to teach him how to view his limitations. To inspire him to overcome his obstacles. To teach him social skills that will allow him to gain close friends who will look past any mobility equipment he needs, because he is such a great guy to be around. It will be your influence that encourages him to try new things and to explore careers options early on that will give him satisfaction, pride and economic stability. Concert violinists do not need to be able to run. Artists and writers need not climb. You do not need to feel your feet to become a lawyer, a politician or a police dispatcher. The range of capabilities of a child with SB vary widely. Some children have full physical abilities, some can walk short distances. Surprisingly, you don’t really need to feel your feet to be able to walk. With practice and braces, many things are possible. Often wheelchairs may be needed, but often not. While you can’t know what you child will be able to do or what limits he will face in regards to physical ability, as his parent, you can help him do all that he can do. They make bicycles and tricycles that are peddled with hands and not feet. You child needn’t be excluded from riding with his friends or from playing outdoors. He doesn’t have to be left out of sports. In many cases swimming is an option. The breast stroke, for example, requires more arm strength than leg strength. Many districts also have adaptive baseball or in colder climates offer a game called “sled hockey” which is similar to regular hockey except all participants must ride sitting down on sleds. These areas are where you imagination helps you. In the future, when you know what your child’s ability level is, and what he likes to do, you can help him dream up ways of doing it. For now though, while you are waiting for your answers about who your child is, whath is favorite color crayon will be, and what nerves in his back have been affected by spina bifida, try to remember that your grief is not his. He will learn a lot about what is tragic and what is normal from you, but his thoughts on the subject will not be exactly like your own.
Feeling numb is also part of the rollercoaster ride that is a pre-natal diagnosis. Moments of apathy, of feeling like you are “here but not here” will happen too. This is your mind’s way of helping you cope with an overwhelming situation. When you reach certain saturation points, and get really overwhelmed physically, mentally and/or emotionally, you may feel like everything “shuts down” for a while. After a time, this numbness will pass just like all the other intense emotional waves you experience. It is expected that you will cycle through a variety of feelings in the beginning. By dealing with them one at a time, you can help yourself manage them. You should know that if you ever feel you cannot manage your emotions, there is no shame is seeking the assistance of a professional counselor to talk to. It is for situations like this one that the counseling profession exists. If you don’t have insurance that pays for counseling, often you can contact your county health department and they can point you to a free or low-cost counselor who will base his fee on your income. There are options for help out there. You can also discuss any emotional concerns you have with your OBGYN. For while your OBGYN may not be able to give much information about the issues your baby faces, he is an expert on the ones you face. He is familiar with any medications you can safely take during pregnancy and he may also know of some community resources for counseling that you can go to.