It’s the perfect way to say goodbye to summer and hello to my old friend, fall, whom I haven’t seen in a while. It’s like slipping on my favorite pair of slippers, warming myself with some hot apple cider and sitting down with a life long friend to reminisce and laugh about the good and sometimes the not so good times that we affectionately call this wonderful life. That’s how fall feels to me.

Which is why I think it’s the perfect time to remind ourselves and others the wonders of Spina Bifida. Before we head into the month of thanksgiving, October is a great month to celebrate our differences and bring awareness to the uniqueness in all of us. Not only is October Spina Bifida Awareness Month, but it’s also Down Syndrome Awareness Month and Disability Awareness Month.

So what are some ways that you can bring awareness to your community about Spina Bifida and cultivate a community of acceptance for those living with Spina Bifida?

Here are 10 ways to promote awareness in your community. Hopefully, this will spur some ideas of your own. Be sure to share them with us at the end of this post!

1. Share Facebook Memes from Spina Bifida Association

So, this is the easiest (and personally my favorite) way to promote Spina Bifida awareness. Share Facebook memes from the Spina Bifida Association’s page. Or maybe you follow another Spina Bifida group that you could share their memes on your own Facebook page. It’s a great way to reach a large number of people to share interesting facts about Spina Bifida. You could also make your own memes to show how Spina Bifida has affected your child.

2. Coordinate a School (or Workplace) Spina Bifida Awareness Day

Talk with your child’s school about having a special day to promote Spina Bifida. Have a pajama day, or wear two different types of shoes, or everyone wears teal or yellow. Spina Bifida’s ribbon color is yellow so you could also give out yellow ribbons for your child’s class. See if your child could talk to his or her class on that day to explain what Spina Bifida means and how it affects them. If your Spina Bifida child is too young for school, maybe big brother or sister would be excited to have a show and tell day. They could even read a book to the class to explain what Spina Bifida is.

3. Walk-N-Roll for Spina Bifida

Participate in a Walk-N-Roll in your area.This is Spina Bifida Associations biggest fundraiser for community programs and national research, education and support.* If you don’t have one nearby, you can create your own! You can register for My Walk-N-Roll for Spina Bifida and learn more about creating a special day in your community. Invite friends, family, and neighbors to join your team and have a fun time supporting a great cause.

4. Set Up a Display at Your Local Library

This doesn’t have to be anything fancy. It could be a printout of a picture of your child with some interesting facts about Spina Bifida and fun facts about your child’s likes and favorite things to do. This is a great way of making it personable and more interesting to others when learning about a condition they know nothing about.

5. Join Team Spina Bifida

If your passion is running, cycling, competing in marathons or other athletic events, consider joining Team Spina Bifida to raise awareness and funds for Spina Bifida. You can choose your own event and the minimum amount of money you want to fundraise. In return, they will provide you a Team Spina Bifida shirt and some other cool goodies to make your event a success.

6. Share Your Story!

Don’t forget the best way of promoting Spina Bifida awareness is by sharing YOUR story. Share on your choice of social media platform. You can also email Spina Bifida Association at communications@sbaa.org and you may find your story on their website or social platform.

7. Coordinate a Spina Bifida Awareness Fundraising Event

Have a bake sale or a lemonade stand. This would be a great opportunity to team up with another family who wants to promote the disability their family is experiencing as well. You could set up a booth outside of your favorite store to sell some baked goods and promote that all proceeds are going to your local Spina Bifida chapter. Make sure to include a small handout or card explaining what Spina Bifida is. Or if you want to start out small, start one in your own neighborhood! It would be a great way to meet your neighbors while enjoying the cooler temps!

8. Team Up with a Group that is Advocating Disability Awareness Month

In our little town, this time each year an insurance agent and his team puts on a Disability Awareness Day by providing a meal, a small pumpkin patch, pumpkin painting, and games. It’s open to everyone and it’s been growing the past three years. Find someone in your area that you could team up with and promote Spina Bifida Awareness Month.

9. Donate Books to Your Hospital for NICU or PICU Kiddos

Check with your local bookstore to see if they would be interested in donating some books to the sick children in your local hospital or the hospital where your child is treated for Spina Bifida. If you’re having a hard time finding a place that will donate books, you could donate a book or two to your child’s doctor’s office or dentist office. Make some sticker labels to stick to the inside and say something like “Spina Bifida Awareness Month is October. Spread kindness everywhere!” If you’re looking for a book to share, this one would be a good one.

10. Spread Kindness and Your Message

Pay for the meal behind you in the drive-through and leave a card about October being Spina Bifida Awareness Month. Who says you have to wait until Christmas to spread kindness to others? Leave a gift card (or some chocolate!) for the postman in your mailbox with a card about Spina Bifida Awareness Month. Give something small to your child’s bus driver like a bottle of water, a pack of gum, or even a hand drawn picture from your child. Tell them thank you for their service and mention that you are celebrating Spina Bifida Awareness Month.

What’s Next?

Hopefully, you have been inspired to take action to bring about Spina Bifida awareness even if it’s in a small way. This is a great month to celebrate our differences and by sharing may we all realize being unique is what makes life exciting and beautiful. Because how boring it would be if we were all the same?!

Don’t forget to share your ideas of promoting Spina Bifida Awareness Month. I’d love to hear them!

If you would like to leave a personal message, contact me and let’s chat!

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*Spina Bifida Association’s webpage

The post 10 Ways to Prepare for Spina Bifida Awareness Month appeared first on Breaking the Confines.

The option to have prenatal surgery is between 19 and 26 weeks gestation. You and your baby have to meet certain conditions and testing has to be done to make sure that both of you are the right fit for this kind of surgery. 

The Benefits of Prenatal Surgery

Let me share with you the information that we received about the fetal surgery. Once it was confirmed our baby did have spina bifida, we had two very L-O-N-G and intense days at the hospital meeting various doctors, nurses, and social workers. 

The first day was a series of tests. They did a fetal MRI, fetal echocardiogram, and an ultrasound. The MRI and ultrasound were to confirm the baby did have spina bifida and to determine where along the spine they thought the defect (or opening) was located. They predicted his defect was from L1 to S1, which is the lower part of the spine affecting his legs and feet movement, and bladder and bowels. The fetal echocardiogram was to make sure his heart was healthy enough to withstand surgery and did not have any defects. 

The second day we meet with various doctors and were given the pros and cons of the surgery. We were told it appeared the baby and I were good candidates for the surgery. If we wanted to proceed, an amniocentesis would need to be done. I believe that was to rule out any chromosomal defects.

According to the MOMS (Management of Myelomeningocele Study) Trial, this prenatal surgery would improve his chances of not having to need a shunt, “corrects” the hindbrain herniation (also known as Chiari II Malformation), and increases his chance of walking without crutches or other equipment at 30 months.* 

Doctors think that once the prenatal repair is done and the leakage of the cerebrospinal fluid (CSF) is stopped, it causes the brain to shift upwards to the correct position in the skull. This allows the CSF to flow freely and prevents the need for a shunt. The surgery also protects the spine and exposed nerves from any further damage while in the womb, giving him a better chance at walking. 

Postnatal surgery on the other hand does not correct the Chiari malformation which means there is a higher chance of needing a shunt. Also, any damage to the nerves while in the womb is permanent.

These were the possible benefits of having the surgery as long as the baby was able to stay in the womb long enough to mature to full term or make it to around 32 weeks.  According to the doctors, if the baby was born before 32 weeks, it did not give the surgery enough time to help the brain to rise back into the skull to improve the flow of CSF.

The Downside to Prenatal Surgery

There are several pretty heavy risks involved that you have to consider. 

First, the mother has to stay in the hospital for about five days after the surgery. Then she has to stay close to the hospital for about two weeks and have someone with her 24 hours a day. If she has no complications after three weeks, then she is able to return home until it is time to deliver. The delivery would have to be by cesarean birth as would any future deliveries due to the scar caused by the surgery on the uterus. 

In our situation, we lived an hour and a half away from the hospital with no family close by the hospital that could be there for me while I recovered from surgery. My husband still had to work so he couldn’t stay with me. 

Other factors we had to consider is that I did not have enough leave to do the surgery and have maternity leave. We also had a five year old that still needed her mommy and daddy to be present in her life. 

Another downside to the prenatal surgery is the possibility of an early delivery which would mean an even longer hospital stay which could be weeks or months depending on what complications the baby was having. Whereas, if the surgery was done postnatal, the baby would typically be in the hospital for two weeks to give the back time to heal while the baby was on his belly the whole time. 

One of the factors doctors consider when determining if the baby is a good fit for this surgery is the size of the ventricles in the brain. If the ventricles are already of a certain size, then that is an indicator that the baby will for sure need a shunt at birth. 

The ventricles in our son’s brain were already of significant size so there was already a big possibility that this surgery would not prevent a shunt. 

The most alarming consequence of the prenatal surgery was the possibility of an early delivery. We were told that the uterus is very tricky and a lot of times the water ends up breaking very easily causing a very early delivery. We were warned that if he was born before 30 weeks it was a lot higher of a chance that he might not survive. 

Ultimately, we were not willing to chance his life just so that he “might” not have to have a shunt. We decided we would rather have our son with his handicaps than to risk his life. 

I knew my body and my mother’s intuition was telling me my body could not take this type of surgery. My firstborn had to be delivered early and was a NICU baby. The year before this pregnancy we suffered a miscarriage. It seemed very risky to go into this type of surgery. 

This decision was one of the scariest and toughest decisions my husband and I have ever had to make. It felt as though we were determining not only the fate of our child’s future but his unborn life as well. We were not willing to take the chance that he might not survive because of this surgery so we prepared ourselves that he would have the surgery soon after he was born. 

The Final Decision for Prenatal Surgery is in Your Hands

Please don’t feel persuaded into thinking that prenatal surgery is the better option because it is not. There is a lot of pressure in making this kind of decision but just know that whichever way you decide, your decision is the right decision for you and your family. No one can tell you which way is the best nor should they try to tell you which is the better option. You are not limiting your child should you choose to not have the surgery. 

No one could have predicted my son’s outcome. Even though we were presented with this opportunity, we quickly were at peace with our decision. Four months later our son was born by a scheduled c-section at 38 weeks. He was born at one hospital and the transport team from the children’s hospital was there waiting to take him where he would have the surgery to repair his back. 

We were initially told the surgery would be done within 24 hours of birth, but this kid came out of the womb with skin covering his lesion. He was our miracle baby! So, instead of surgery, they decided to monitor his back for any signs of CSF leakage. Nine days later we were headed home! 

He did eventually have his back surgery but the doctors wanted to wait until he was a little older and stronger. They repaired his back at seven months old, six days before Christmas. And we were home before Christmas!   

He did have to have a shunt at almost five months old, but he has made leaps and bounds developmentally in all areas since then. He does wear orthotic braces for his feet and ankles, and he’s so close to walking on his own without any assistive devices.

So just remember that even the doctors don’t have it all figured out. Trust your instincts, Momma. God gave them to you for good reason! 

What are your thoughts about the prenatal surgery? Were you told anything different from what we experienced? Leave a comment below and let me know!

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*The MOMS trial is reported in the New England Journal of Medicine, March 17, 2011. The article is “A Randomized Trial of Prenatal versus Postnatal Repair of Myelomeningocele.” 

The post Why We Chose Not to Have Prenatal Surgery (And How It Turned Out) appeared first on Breaking the Confines.

But how do you prepare yourself for having a spina bifida child? What “things” are necessary to do beforehand? Do you start prepping your house for wheelchairs and medical equipment? Actually, I wouldn’t go that far. The best thing you can do is mentally prepare yourself for an unknown future. And learn as much as you can about spina bifida and the conditions caused by spina bifida.

That may not be the answer you were looking for, but if you can prepare your mind, you will be able to better handle what will happen next.  It’s good to know what conditions are commonly associated with spina bifida which vary in severity with each child. Your child may or may not struggle with all of these conditions but it’s best to be cognizant of the possibilities.

Let me just put this out there. No matter what the prognosis might be for your little one, he or she will amaze you with their accomplishments. So if you’ve been given news from the doctors on what they think your child will be like physically and mentally, take it with a grain of salt. This child is a gift from God and only He knows what amazing things lie ahead for little junior!

Before we get into those other conditions, let’s first talk about the different types of spina bifida and briefly touch on surgeries.

3 Types of Spina Bifida

It is likely that you are already aware of the different types of spina bifida if you are a soon-to-be parent of one of these awesome kiddos. But for the sake of being thorough, we will briefly touch on each of these.

• Spina Bifida Occulta – This is the mildest form of spina bifida as there is no opening on the back.  Most of the time it goes undetected until the symptoms of a tethered cord presents itself. 
• Meningocele – Part of the spinal cord is pushed out into a fluid-filled sac. For most individuals with this type of spina bifida, there is usually no nerve damage. 
• Myelomeningocele – This is the most severe form of spina bifida and the most common. This is where the nerves and spinal cord protrude through the open spine. Oftentimes, the nerves are exposed with no skin covering and surgery is performed within the first day or two of life to prevent infection and further nerve damage. 

For the purposes of this post and this blog for that matter, we are mostly referring to the kiddos with myelomeningocele. 

Surgeries Associated with Spina Bifida

Although it is impossible to tell you how many surgeries your child will need or when to expect the next one, that very first surgery could be before your little one is even born. The option to have prenatal surgery is before 26 weeks gestation. I have a separate post that goes more in depth about prenatal surgery and the decision we made about that surgery. You can read that post here.

Other types of surgeries that could be in your child’s future would be:

• Surgery to detether the spinal cord
• Treatment of hydrocephalus and recurrent shunt surgeries 
• Bladder and bowel problems
• Orthopedic problems – Foot/ankle deformities, hip issues, fractures, contracted muscles 

I wouldn’t let this list scare you because you still have not met your little one. Spina bifida and its complications are not predictable. That’s why it is often referred to as a snowflake condition. No two children will have the same issues, surgeries, or outcomes. With that being said, let’s now look at those other conditions caused by spina bifida.

4 Conditions Caused by Spina Bifida

Hydrocephalus and Chiari II Malformation

Hydrocephalus is the most common condition caused by spina bifida. This is also associated with Chiari malformation which is caused by the spine being pulled down into the brainstem. The flow of the cerebral spinal fluid gets “clogged” so to speak and starts to pool up in the ventricles of the brain. There are two ways the extra spinal fluid can be dealt with; a shunt or a procedure called endoscopic third ventriculostomy (ETV). If ETV is successful, this avoids the need for a shunt. Shunts come with their own set of worries that will continue for a lifetime so if ETV is a possibility for your little one, you should give it some serious thought. 

Neurologic Function and Progress

Since spina bifida directly affects the nerves, it is likely your child will see a neurologist. It is common for kids with hydrocephalus to be susceptible to having seizures. Your neurologist will want to follow up to make sure there have not been any changes with seizures. The doctor will also evaluate how well your child is progressing with his milestones and may suggest more therapy if there seems to be significant developmental delays. 

The neurologist will likely refer your child for a vision exam before the age of one to make sure there is no pressure behind the eyes and to determine if glasses are needed. This is a common result of hydrocephalus.  

Bladder and Bowel Control 

Bladder and bowel control is another common issue caused by spina bifida. Depending on where the defect is located on the spine, this will determine what possible nerve damage there will be and what other organs and limbs are affected. Things can go bad pretty quickly if the kidneys or bladder get infected so it’s essential to be aware of any changes in the urine. That’s why it’s important to follow-up with the urologist every six months for an ultrasound of the bladder and kidneys to make sure they are functioning properly. 

Muscle Weakness Above and Below the Defect

Muscle weakness occurs in the trunk and limbs above and below the defect on the spine. Most likely your child will need the use of some assistive devices for his or her legs and feet. Orthotic braces for the legs and feet are pretty common with spina bifida kids. At one growing phase or another, your child may need an assistive device like a stander, wheelchair, reverse walker, or walking sticks. 

Therapy, Therapy, and More Therapy

Although therapy is not a condition, it’s the result of a condition. Lots and LOTS of therapy will be in your child’s future! There are specialists that can help with developmental delays whether that’s due to physical or mental delays.

Speech, occupational, and physical therapy will help your child reach his or her milestones at just the right time for them. Check with your state to see what services are offered for early intervention services designed to help developmentally delayed children from ages zero to three years. 

It’s frustrating and heart-breaking to watch them struggle with just the simplest task such as sitting up on their own, but once it’s accomplished, you’ll never feel more proud of your little one! And it goes without saying that the most influential person in helping your child reach those milestones is YOU!

Never underestimate the power of your love, support, encouragement, and enthusiasm when your child is working so hard to do “normal” things and reach those milestones. Their little faces will beam with pride knowing you are cheering them on!

Where to Go From Here

I would highly recommend finding a local spina bifida group to connect with. You can search for groups on Facebook or you can visit the Spina Bifida Association’s website to find a local chapter or online community. These groups and communities are a valuable resource for your family as you navigate through this new world. 

Hopefully, you feel more prepared and less in the dark about this other side of what will be the new normal for your family. It’s definitely not the easy path but you will learn and grow so much along the way. Your child will inspire you in ways you’ve never imagined. Your new normal will make you see things in a different light and might I dare say, your world more precious and beautiful!

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Photo credit to:

Shitota Yuri

The post Know the 4 Conditions Caused by Spina Bifida Before Bringing Home Your Baby appeared first on Breaking the Confines.

I so badly wanted to be a part of the Huxtable family as a child. Do you remember “The Cosby Show?” Dad was a doctor and mom was a lawyer. They always had the best ways of teaching life lessons to their kids. They were always making each other laugh and spending quality time together.

I was convinced they were a real family and even after I knew the truth I continued to believe they were real. I wanted to wholeheartedly believe that a family like that existed. And I wanted to be that family someday.

As children and teenagers full of hope and big ideas, we dream of what our own families will be like. We dream of what our occupation will be, who we will marry, and how many kids we will have. We even think about what kinds of pets we will have and how many.

What we usually don’t dream about is having a child with spina bifida (or any kind of disability for that matter). We don’t dream about raising a child that will never be like his siblings. We don’t plan for the difficulties that lie ahead for our little one and for our family as a whole.

And once we get the diagnosis that our child will never be “normal,” we don’t dwell on the blessings of having a child with spina bifida. At least not at first.

Give Yourself Permission to Grieve

We are told that when we lose a loved one to death the path to healing is by going through a grieving process. In the same way, as new parents to a disabled child, there is a path to the new way of life for your family. It is a way of recognizing that your life and your family’s life will have a new normal.

1. There Must Be A Mistake (Denial)

You have just received news that this precious baby will face many difficult and heart-breaking challenges in life. And it’s not fair.  “Why did this happen? Could there be a mistake in the test? What could I have done to prevent this?”

I remember the day we were told our son appeared to have spina bifida and that we needed to be referred to a different hospital for another opinion. We were already on pins and needles the day of the appointment. My OB had personally called me a couple of weeks beforehand to give me the blood test results for a protein produced by the baby. Abnormally high levels indicate spina bifida. I remember her telling me the range that it should be in and although the levels were considered high, it was at the lower end of the high range. So, it was a good possibility the test was not accurate.

Although we knew there could be this potentially bad news, we wanted big sis to meet her baby brother. She had waited a long time to be a big sister. And maybe in the back of my mind I thought if she was there, it would bring us good news. The ultrasound took f-o-r-e-v-e-r. Then the high-risk doctor told us that it appeared our baby did have spina bifida. He had the lemon-shaped head and a tiny sac on his lower lumbar.

We sat there in shock and disbelief of this realization. At that point, it felt like we were in a bad dream and nothing seemed real. Before being referred to a more qualified hospital, we were asked if we wanted to terminate the pregnancy. I was taken aback by this question. I’m sure it’s just protocol but the OB clinic was housed in a Catholic hospital. How ironic that it’s protocol for abortion to be considered right away after being given devastating news inside a religiously run hospital. I mean we hadn’t even had time to process this information and here we were being asked if we wanted to terminate this precious life.

As I look at my son now and think back on that day, I cannot imagine giving up all hope for him just because he’s physically a little different. To see how he has beat so many odds already is amazing. He continues to astound me every day.

2. My Baby Doesn’t Deserve This (Anger)

It’s a guarantee you will feel quite enraged about this new reality. The unfairness of it all. Why is this happening to your family? Hasn’t there been enough chaos and torment already? First a miscarriage, then your father gets diagnosed with brain cancer. And now this. All within one year. Enough is enough.

A lot of things are unknown during a pregnancy with a spina bifida child. And the doctors can’t predict the future for your child nor should they want to. In the meantime, you have to mentally prepare for a lot of scary things that could happen. Will the baby have any feeling in his legs and feet? Will he have to be catheterized? Will he need a trach or a shunt?

It’s scary to think about the future and normal to feel anger and disappointment that this is affecting your baby.

3. If Only I Had … (Bargaining)

This is where guilt can set in but you have to remember it’s not your fault. You did not willingly cause this to happen. You will have a million “what if’s” and you will blame yourself every time. Don’t allow yourself to stay in this place for long. It’s not healthy for you or your baby.

The best thing you can do besides lots of prayer is have positive thoughts. Say these things out loud and speak them to your child. I used to stand in the shower and rub my belly as I spoke positive words about my son. I know it sounds a little cuckoo and it will feel very uncomfortable at first. But it’s allowing yourself to realize you are not to blame. You are speaking into existence a positive future for your child.

4. What Good Can Come From This (Depression)

You notice other kids riding their bikes and running. And you realize your child may be paralyzed from the waist down. Your baby may never be able to run or ride a bike. At least not like normal kids. The truth hits you hard. Almost knocks the wind out of you and leaves you with tear-filled eyes as you drive down your neighborhood street on a beautiful sunny day.

“This is not fair! Life is so cruel.” With this darkness looming over you, how can you find the good in this situation? It may seem like this dark cloud will last forever as your child will continually face new challenges, surgeries, and countless doctor’s appointments, but I promise the dark cloud will dissipate.

5. This Baby is Perfect (Acceptance)

One thing is for certain. You will love this baby unconditionally and you will realize what a miracle she actually is. She will remind you of this every day as she strives to meet her milestones. You will eventually find peace and acceptance with the fact your child is especially unique. And you will rejoice with even greater joy at the smallest of accomplishments. That milestone of rolling over? It might take six months but boy when it happens, sheer joy!

Your New Normal, Your New Family

Once you have come through to the other side of the grieving process, you start to find the new normal for your life and your family’s way of living. Eventually, you start to see the beauty this new way of life holds. And my how beautiful the view is.

I leave you with an essay so lovingly written by Emily Perl Kingsley. It is called “Welcome to Holland.”

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

One Last Thing

I would like to say along with all the other moms and dads of special needs kids, “Welcome to the family!” You are now a part of a special community that understands your pain, your grief, and your joys that families without special needs kiddos do not understand.

To learn more about spina bifida check out Spina Bifida Association’s website for a ton of resources and information.

What have you learned so far from your journey?

The post How to Deal with the Diagnosis of Having a Child with Spina Bifida appeared first on Breaking the Confines.