So here’s the deal….it’s GIVING TUESDAY, right…and I can’t let the day pass me by without “giving” – but an even more amazing thing would be encouraging others to help me give. I’m giving away an opportunity to win a photo session +prints with me or a photo mentoring session. Bear with me as I share my heart as to ‘why’ I’d like you to give first.

If you’ve been following my photography you likely already know – just over 5 years ago we learned my son Chance would be born with the birth defect spina bifida. The diagnosis is a pretty scary experience…hearing he’d be born with the most ‘severe’ type of the birth defect didn’t help. It was also tough hearing I shouldn’t “google” the topic – and after receiving information that was 20-30 years old I admit…I couldn’t help but search online for information and support. I was more terrified the more I learned from the resources I found.

Looking back over the past five years its been an observation that resources mostly tell families what is “wrong” with a child with spina bifida. While resources may give a medical perspective of the birth defect, they don’t really share what life with spina bifida is really like.  There’s little hope or optimism shared after a diagnosis – but from the moment our son was born that’s all we’ve experienced. Chance has surely faced a great deal of adversity in his life – but he’s proven his life can be amazing and he’s one of the coolest kids on the planet! I still think back to five years ago and remember it like it was yesterday – like so many other families – we were so frightened and we seriously considered all of our options, including termination. Now that he’s here it’s hard to believe we nearly gave up on our own child’s life. Why? Because of the challenges we were scared we could care for? Because we didn’t want him to suffer? Because we didn’t know if we or our family were strong enough to care for a child with significant needs? Well we are…and this kid has proven how remarkably amazing it can be to live through the uncertainty of living with spina bifida.

The past five years of my life I’ve devoted a considerable amount of time photographing individuals living with spina bifida. I’ve not only lived with the challenges and triumphs raising our son, but I’ve been honored with the experience of meeting so many other families who are living this journey. I’ve seen the struggles and witnessed the happiness that can be experienced. My heart has ached for the many families I’ve since met who have also received the diagnosis – knowing they’ve faced the same tough decisions and fears for their child’s life.

Over the past year I’ve teamed up with a group of professional photographers who have also begun to volunteer their time to photograph families affected by spina bifida. Every photographer has a direct connection to spina bifida just like me. We’ve had several other volunteers also join our group who have a passion for helping the spina bifida community. After doing extensive research we realize so many of the project ideas we have to create awareness of spina bifida and to help improve resources would require funding. In May 2016 we received 501(c)3 status as a non-profit with the hopes it will help us ensure we are able to seek the support needed to make our vision a reality. Just over a year ago we began a facebook page and are currently working on branding, our online presence and other resources such as a resource for newly diagnosed families – all of which require support.

In the past year our page has seen nearly 8k fans in more than 45 different countries. Just this past month we’ve received communication from families in the U.S.,  various countries in Europe, Iraq and Australia – newly diagnosed families or new parents who all sought support and were praying to find hope. It’s 2015 and sadly so many newly diagnosed families receive little to no information about spina bifida, receive outdated information, or are encouraged to give up on their child’s life. It’s 2015 and its sad to know that prenatal resources primarly share only what is ‘wrong’ with a person’s life who is born with spina bifida. These kids are so much more than their diagnosis and families deserve to hear just how much potential their lives hold. Spina bifida is the most common permanently disabling birth defect yet so many around the world still know very little about it. It’s time we help improve the world’s perception of spina bifida – the team of volunteers I have worked closely with this past year truly believes it is possible – we hope to be the change we wish to see in the world.

So its time to share my giving opportunity. As many of you know, our son Chance has a surgery coming up – so we’ll end this opportunity on December 6th, 2015 so that we can announce a winner on December 7th before he undergoes surgery the following day. Here’s your opportunity to either win a photo session + prints or a photo mentoring session…

FREE PHOTO SESSION ELIGIBILITY?
Here’s what you have to do for a chance to win a FREE photo session for those who care to participate.

• Go to the fundraising page for Redefining Spina Bifida (https://fundly.com/redefining-spina-bifida) and make a minimum of a $10 donation to Redefining Spina Bifida.
• After you’ve donated if you’d like to earn additional entries into this contest you can share on social media (only if you’ve made a donation too) – be sure to email me to let me know you’ve shared the fundraiser on social media.
• Email me to let me know you’ve donated and shared the page – email me here: amanda [at] amandakern.com When emailing me share with me your donation amount, name, contact information and the ages and number of people of who you wish to be photographed so that I can get back in touch with you if you are chosen. If I don’t receive an email from you your name will not be included in the entry. If you donated prior to this announcement I will still honor your donation as an entry – just send me an email.
• You may enter as many times as you like. For every $10 you donate your name will be entered into the photo session giveaway if you have emailed me your donation confirmation. (You can make a larger donation and have it counted as multiple entries…for example, a $100 donation would equate to 10 entries).
• To be eligible for the free photo session you must donate prior to Dec 6, 2015 at Midnight. The names of those who have helped me will be collected and a winner will be chosen randomly. Entries will ONLY be accepted until Midnight on Dec 6th, 2015. A Winner will be announced on December 7th, 2015.

IF YOU’RE THE WINNER…If you’re chosen as the winner you will have two options.
OPTION 1: FREE PHOTO SESSION + PRINTS!

•  A free photo session with me that will last 1-2 hours for you, your family, or someone you wish to give the session to.
• The session will be valid between January 1, 2016 through December 31st, 2016.
• You will receive all edited photos in HIGH DIGITAL RESOLUTION format. Yes, I said FREE. That means I earn NOTHING by giving.
• Your session will also include one canvas print 18″x24″ as well as a print package including (2) 8″x10″ prints, (6) 5″x7″ prints, (10) 4″x6″ prints, and (2) set of 8 wallet prints.
• You will be given permission to print and share online all digital photos for personal use.

*By participating if you win you agree that photos may be used in my portfolio.
**You must be in the immediate Orlando area or willing to travel to Orlando if you win.
***The value of a custom photo session w/high resolution photos and prints is $1000.

OPTION 2: PHOTO MENTORING SESSION
I’ve received a lot of requests and inquiries for me to offer “mentoring” sessions. I’ve lost count of how many people have asked me “how” to I do something or if they could just spend an hour or two with me to see how my photography and/or editing approach. If you are chosen as the winner you have the option to select the mentoring session and it will be customized to meet your needs.

• A free photo mentoring session with me that will last 1-2 hours. This includes the opportunity to sit in and participate in a photo session with me.
•  The session will be valid through January 1, 2016 through December 31st, 2016.
• The mentoring session will be customized to meet your needs and could include tips on photography, editing or a combination of both.

*By participating if you win you agree that photos may be used in my portfolio.
**You must be in the immediate Orlando area or willing to travel to Orlando if you win.
***You are suggested to have a digital slr, photoshop and lightroom. If you don’t a mentoring session can still be offered but it may make more sense if you have access and/or a little previous experience to these things.

Whether you’re able to donate or not, perhaps you can help spread the word to others you might know that might be interested in supporting the cause or who might be interested in my photography. Thanks in advance for everyone’s support. Together I know we can improve the world’s perception of spina bifida.

You are still so young and I’m not sure you’ll fully understand the news we will have to prepare you for – but it only seems appropriate to express my heart as we must now also share this news with our family and friends and the many people who have come to adore you. There’s no easy way to share this news – in a few weeks you will need to undergo your 14th surgery to detether your spine. You and so many of our loved ones probably don’t understand what that means – so I pray sharing this update will help our loved ones understand what life has been like this past year – and what has lead to the need for this surgery.

At the start of the year I recall dreaming you’d gain strength to walk independently – but truthfully was just as excited to see you begin to learn to use your crutches independently. By February you mastered them within a week of receiving your own pair – and we were feeling more confident than every before that you might someday also take independent steps someday.

Over the spring you began to get stronger and showed a lot more confidence in using your crutches. You’ve been such a proud little guy who was proud to have improved your ways to move around. You proclaimed often that you wanted to walk all by yourself – and you wanted to use your crutches just about everywhere we went. But in the spring was also when some of these symptoms first began. We noticed you complain multiple times of back pain and neck pain. We even did an MRI this spring to check on your back – and things really didn’t look much different from the past two year’s worth of MRI’s. We all agreed that physically you were looking stronger and we agreed to watch you closely.

You’ve also had many headaches. A month or two before your shunt malfunctioned we did a 24 hour EEG and it showed your EEG activity has progressed and has begun to show new activity on the opposite side of your head.

We continued to do therapy and did all we could to help you get stronger – you worked so hard and looked so strong. You’re one determined kid Chance – through all of these challenges you try so hard to do things that are tough for you.

At the end of May you went through your 13th surgery for a shunt malfunction – you show symptoms so clearly when your shunt is failing – but you rebounded quickly. Though you continued to have headaches most days – they would pass and you would continue to show your spirit to us all. This photo was taken on Father’s day this past year – and have to admit it reminded me that you have some very special loved ones in heaven looking down on us – and my heart was reassured this very day that they will help protect you through every challenge you may face in life.

The toughest part of surgery is that you always have to wait six weeks to be allowed to swim again. We counted down the days after your 13th surgery and exactly six weeks post-surgery we went swimming. Most who don’t spend their entire day with you don’t see the symptoms and challenges you’ve been facing – and often times they passed within minutes. It has made it hard to help everyone understand our concerns. I still remember your excitement to swim that day and an hour later you grabbed your head in pain – and cried “my head hurts”. The most we can do is reassure you that you will be okay – we watch you closely and almost always it passes within minutes. For the past few months these headaches have happened most days at least 1-3 times – sometimes as much as a dozen times in a day.

Though you were having headaches just about every day and beginning to make us worry that your shunt was failing again – you continued to work so hard every time you had therapy. I still remember these two days of therapy so well – both days you showed us signs that something just wasn’t right…you weren’t feeling well but continued to work hard.

At the end of July you had your bi-annual spina bifida clinic – it’s when we get to meet with all your specialists and discuss our concerns. I still remember telling doctors that I feared something neurological was going on or that your shunt might be failing. Over the summer you began to feel more nauseous as well – I recall asking your doctor for anti-nausea medicine because you would feel sick, gag or get sick at least a few times a week. I wished medicine would help you – but it really didn’t make a difference.

The hardest part was that your symptoms hit you so fast that you would get a headache or feel really sick or tired with such short notice – and sometimes the moments would pass fast – usually most of your days you were still so energetic and just as happy as we all know you are.

At times it felt like it was an every day event where part of my day was spent holding you with head pain – and the next minute you were acting super silly.

We agreed with your neurologist that we’d repeat an EEG and see if results changed. We were asked to press the event button to alert them if you had any headaches – I we pressed that button a few too many times and I feared the results. Thankfully your EEG activity has not increased – and we were reassured that headaches were not happening with EEG activity – which was great news.

Over the first few months since your last shunt surgery we saw your neurosurgeon several times – she even reprogrammed your shunt 3 different times. The hope was that your shunt was only overdraining – a CT scan confirmed that was the case. Because it’s a programmable shunt she was able to change how much your shunt was draining the CSF fluid from your head. Your headaches still happen for brief periods of time even after reprogramming your shunt a few times.

In addition to nausea, gagging, and getting sick – you began to get abdominal pain. We began to grow more worried because there seemed to be so many symptoms happening. In September we did 3 different ultrasounds to rule out a pseudo cyst, to check on your bladder/kidney health, and to take a look at other parts of your stomach. All of the tests were inconclusive but every day you continued to complain of stomach pain, nausea, and somedays you were getting sick.

This September we signed you up to do intensive therapy. We had so many of our friends and family donate to help us pay for physical therapy that is not covered by insurance. You responded so amazing to this therapy and worked so hard. We truly love the therapists at Believe Therapy because they’ve helped you work so hard to get stronger and helped you have so much fun doing so.

During your therapy sessions you continued to work hard but you continued to have random headaches, stomach aches, and you began to complain of other pains. You had moments where you had brief pain hit you in your neck, shoulder, arm, hand and sides. A few times you also complained of knee pain and your little toes began to move more than we’re use to seeing. You do have some movement in your toes but due to your spina bifida it’s not a signifcant amount – but by September your toes began to twitch and move involuntarily. All these symptoms didn’t prevent you from working hard – you loved playing blast off, pretending to be a ninja, riding a pretend horse, flying like superman, playing football and basketball and pretending to launch like an angry bird.

The team at Believe Therapy helped you so much – and by the end of your intensive therapy you were beginning to stand in the therasuit for longer period than you had ever done before.

By the end of your therapy session I began to notice your left leg turning inward slightly. I’ve said all this time this year that your little legs are growing and that perhaps it’s just a little harder for you to control your legs and your balance. But before the end of September we noticed you beginning to trip more too – and on the day we saw your foot turning inward more we took this video. It was the first sign of changes in your mobility that often occur with tethered cord.

We put you through more tests, your second sedated MRI of the year to check on your brain and spine. Through it all you’re smiling.

With all the symptoms and pain you were experiencing we were truly expecting to see changes in your MRI – but really this test looks nearly the same as the last few you’ve had. Two years ago you underwent a chiari decompression to help improve symptoms you were experiencing – and we saw great improvements but this year your little body is telling us something is wrong. In this first MRI image you can see your spine and within it is the syrinx we’ve known has been present since you were a baby – it’s a common thing to happen with people who have hydrocephalus and typically isn’t a huge concern unless a person is experiencing symptoms. The more pressure within your spine in the area of your syrinx could impact how your body functions.

This second image of your spine shows your birth defect – and also the area where your spinal cord is tethered. Everyone living with spina bifida is considered to have a ‘tethered cord’ – essentially it means your nerves are intertwined in the scar tissue that formed after your birth defect was repaired. Usually doctors don’t intervene until a person is experiencing symptoms. Tethered cord can impact many functions in a body as a person grows – and happens most common in children between your age and the teenage years – it happens most when a person goes through major growth spurts. You’ve definitely grown a bunch this year. We began to suspect you might be experiencing tethered cord symptoms since September but agreed to find out the results of other tests that could help us confirm your body was experiencing a decrease in function.

A few weeks ago we had you go through a GI test – I admit i was fearful to head to a test that was ran by ‘nuclear medicine’ – but we were reassured by your GI doctor that it would help us better understand your stomach issues. This test required you eat food and take pictures several times over the course of several hours to see how quickly your food would move through your upper stomach. This test helped us rule out reflux and we were able to confirm that your stomach is ‘emptying’ food from your upper stomach very slowly. From a GI stand point we can give you medicine to help you some – but it has been one more sign that helps show your doctors that your body is experiencing neurological changes. By this point you also began showing signs of changes in your bowel function – which has been frustrating knowing we’ve come so far to help you be healthy and work towards continence and strive for independence in your own care.

This past week we took a trip up to Jacksonville to visit their urology team to do a urodynamics test. We met the most amazing team who truly cared and did all they could to accommodate your appointment in order to help your doctors do one final test to help us determine if surgery is needed. We left learning your bladder function has changed – it has decreased and the bladder pressure has increased. Over a long period of time it is not good for your body to experience the pressure we witnessed during the test and could impact your bladder and kidney function further. I left this test knowing you would need surgery.

We met with your neurosurgeon Wednesday. When we first arrived you walked around in her office for us. I noticed your leg turning inward more – and you began to trip a lot more. I have kept saying maybe you’re just growing and as your legs are getting longer maybe your just learning to walk with these new changes…but no, we know now that these are very clear indications that your spinal cord is tethered and that if we don’t intervene you may experience a permanent loss of function.

Your neurosurgeon is the best – really, she’s the one who helped us find optimism five years ago through a really tough decision…and here we have been the past few months suspecting we may have another tough decision ahead of us. Five years ago we were frightened of all of the challenges that may come with spina bifida – I still remember reading about tethered cord back then and thinking that we didn’t know how we’d care for a child who might have such significant medical needs. We prayed none of these things would happen to you…but Chance the day we vowed to continue your life – we vowed to love and protect you and make sure you received the care you needed to live the most amazing life possible. We hate knowing you have surgery ahead of you again – but we know this surgery is needed and may help improve the symptoms you’ve been experiencing.

We’re hopeful our family and friends don’t feel “sorry” or pity you for the challenges you have ahead. We trust they will help us show you the love and support you need to know you are loved and that you are strong enough to endure the challenges ahead of you. You were born with the strongest soul I know. Rather than questioning why this is happening or why you have to go through so much – we’d rather remind you and our loved ones that you were born with the strength to endure the challenges. We trust God’s purpose – even when we don’t quite understand it.

Chance our family is stronger with you here – and we will help you stay strong and show you all the love needed to see you through the medical moments you have ahead. We love you.

My son Chance was born a little over four years ago with spina bifida, so forgive me if I’m passionate about advocating for those who are affected by this birth defect – but this little guy has changed our lives. I took folic acid for years before he was born – but he was still born with the birth defect.

For those who aren’t aware of what spina bifida is – it is a birth defect that a person is born with. During the first month of pregnancy Chance’s spine never fully formed. He was born with an opening in his back that was about the size of a silver dollar. This “defect” required surgery when he was just a few hours old. Spina bifida has no cure and often requires complex care in various areas.

I value the role of “prevention” and think it’s so important. Surely you know about folic acid – its the supplement we pray will prevent birth defects like spina bifida. It’s perceived to be the miracle worker in healthy foods and vitamin supplements – and if taken research has proven it CAN reduce the chances of having a child with a birth defect like spina bifida. Eat your foods rich in folate and take your vitamin with 400mg of folic acid – that’s what women should do before and during pregnancy. I did take folic acid and I have a child with spina bifida.

I did everything the doctors said to do – and still have a child with spina bifida – something we tried so hard to prevent. It’s proof that folic acid isn’t the sole way to prevent a child from having spina bifida. But surely every time the topic of spina bifida comes up – many of us parents are questioned and asked why we didn’t take our folic acid. In fact, during my pregnancy one of my own colleagues who is well educated in nutrition asked this very question, “Don’t you know folic acid can prevent spina bifida?” It goes to show that most of society is lead to believe that not taking folic acid is the cause of spina bifida. Well, I have some news for you all…thousands of mothers took their folic acid just like they were told to do and they have children with spina bifida.

More folic acid definitely couldn’t have made my child a more adorable child…aren’t kids with spina bifida some of the cutest on the planet? Our son shared his sweet personality at a very early age.

In Dr. Chilton’s article he notes that another doctor, Scott Obenshain, has shared that fortifying foods with folic acid has decreased the occurrence of neural tube defects like spina bifida – which is very true. He mentions over 5 million children have been born with spina bifida. Currently there are approximately 166,000 individuals in the U.S. living with spina bifida and about 500,000 living with the birth defect worldwide. The article misleads readers to believe that spina bifida is 100% preventable. Although Dr. Chilton does reference that folic acid can help reduce the occurrence of spina bifida by 70% it is disappointing to hear a medical professional refer to spina bifida and disability saying “How much better, though, to not have to head off to college in a wheelchair, to be one of the 22,000 children saved by folate every year around the world from a life hampered by disability!” Folic acid surely can reduce the occurrence of spina bifida by approximately 70%, but it is not a 100% method of prevention of the birth defect. So many causes of spina bifida are still not known and for most women like me. We will never know “why” our child was born with spina bifida. I’ve come to trust that I could not have done more to prevent our son’s birth defect. In fact, raising a child with spina bifida has taught me that some things in life, regardless of how challenging they may be, cannot always be prevented – and what initially is perceived to be a huge burden often proves to be a life changing blessing.

The image below is of our son Chance when he was just one week old after he went through his 3rd surgery to have his 1st shunt placed. Now before you “awe poor baby” our boy – lets appreciate the strength of these kids born with spina bifida. They are resilient and bounce back from some of the toughest challenges in life. When most other people would want to give up – they have learned to thrive amidst the most challenging of circumstances.

Yes, Dr. Chilton, as you say it’s amazing what the “tiniest dab of an important substance can do!” I’m so thankful folic acid has been able to reduce the occurrence of spina bifida by 70% but have you ever given any thought to the 30%? You know the 30% of us who DID take folic acid daily for months or years prior to conceiving. My diet was filled with foods containing folate yet I still had a child with spina bifida. I appreciate you helping educate your community on the value of folic acid supplements, however, for thousands of families folic acid supplements were NOT enough to prevent spina bifida. By no means do I discourage the use of folic acid – but perhaps medical researchers have a lot more work to do to better understand the causes of spina bifida because folic acid supplements alone are not the only solution to reducing the occurrence of spina bifida. So many families affected by spina bifida have spent time wondering “why” and “if” they could have done more to prevent their child’s birth defect. How about doctors do more research into if women conceiving are able to process common folic acid foods and supplements properly? Or perhaps we also place focus on a man’s nutrition and folic acid intake – because surely they have just as much of a role in the creation of their child. Or perhaps there needs to be more research into environmental conditions – there are areas in the United States alone that have a higher occurrence of spina bifida which is evidence that much more than folic acid is to blame for children being born with spina bifida. Folate may help some, but I pray the medical community and those trying to prevent spina bifida stop trying to lead the world to believe that folic acid is the sole way to prevent spina bifida. This article misleads readers to believe folic acid is the magic solution to preventing spina bifida.

My bigger concern is not Dr. Chilton’s mention of the value of folate in a women’s nutrition before and during pregnancy but the references to spina bifida and disability are so disheartening to read. This recent article written by him is anything but heartwarming for a family affected by a disability to read. Yes, I admit – if I had the choice – my son would not have been born with spina bifida. In his four years of life he’s been through so much – 13 surgeries, 6+ weeks hospitalized, and countless medical tests, appointments, and therapies. In fact, his cost of care in four years has far exceeded the estimated lifetime cost to raise a child with spina bifida. The CDC notes that the estimated lifetime cost to care for a child with spina bifida is $706,000 – the birth defect can certainly be costly. I do believe families should do as much as possible to prevent spina bifida because the birth defect typically does lead to a lifetime of medical needs, but please don’t consider individuals born with spina bifida to be confined by their disability or that they will feel “hampered” by their disability. In fact, many born with spina bifida will tell you that the life they lead filled with medical challenges are all they have known and most do not want you feeling sorry for them. Besides, whether or not an individual attends college in a wheelchair – they can still lead an amazing life and I suspect most aren’t sitting there wondering “did my mom take folic acid?” I’ve learned of many people living with this birth defect are leading full lives – attending college and performing jobs such as educators, writers and doctors – certainly proof that their lives are not “hampered” by spina bifida.

Chance may have experienced a significant amount of medical challenges in his lifetime  but I can sense these challenges are strengthening him.

Our son Chance has proved he’s capable of amazing things. If you sit and feel sorry for the medical moments he’s faced you’ll miss out on seeing the great things he has already achieved. I’m pretty sure he can out swim most kids his age!

And rather than fearing if a child may be “hampered” by a life in a wheelchair – I pray doctors sharing information on spina bifida don’t lead the world to believe that all individuals living with this birth defect will be confined to a wheelchair. In fact, many do walk – they may need the support of braces and assistive devices but nearly 70% of individuals with spina bifida do walk with or without support! Even if they require a wheelchair for mobility – I promise it’s not the end of the world. Our son also uses a wheelchair for longer distances and if he ends up going to college using his chair – I surely won’t make him feel like he’s living a worse life because of it.

In so many ways Chance is just like any other kid his age – he loves to color with his brother!

Just like every other kid he has a blast playing at the park.

And he’s an active little guy always on he move – having fun through it all.

He may require a little help at times but overall he’s so much like any other child his age.

In fact, put him out in public and we’re fairly certain he’ll find his way around on his own. In fact he prefers to move around independently. There’s no reason to feel sorry for him because he was born with a birth defect. We tried our best to prevent it  – but we’ve realized he was meant to be in our lives living his life with this birth defect and now we will do all we can do support his needs.

There’s one thing missing from Dr. Chilton’s article – and that’s the ounce of hope needed by families affected by spina bifida – for those families who did take folic acid who have or will have a child with spina bifida. Dr. Chilton you are correct, spina bifida is the most common permanently disabling birth defect with complex challenges that often leads to a lifetime of care and expenses are often 13 times greater than an average child’s medical care. We were reminded of that this past month as our little guy underwent his 13th surgery for a shunt revision.

Dr. Chilton you forgot to mention that individuals born with spina bifida are among the bravest, strongest, and most kind hearted individuals.

They are resilient and no matter how many medical complications they may endure in their life…they are loved.

This birth defect our son was born with – it doesn’t prevent us from loving him. On the contrary spina bifida has taught us just how powerful our love for him is. It’s also taught us that what we once perceived as an “imperfection” has since helped us see that Chance is perfectly made.

I pray the next time a doctor has an opportunity to educate a community or their patients on spina bifida that they find a way to bring more hope to those who may someday be affected by this birth defect. Prevention is important – but lets pause to think about how these families affected by spina bifida may be feeling. So many of us did all we could to prevent the birth defect and have a child with spina bifida. Our world has created enough stigma against spina bifida and disability. We need more doctors who care to also bring hope and optimism to those who may be affected by spina bifida. Rather than trying to eradicate spina bifida from the planet I wished the world would spend more time finding ways to support those families whose lives are forever changed by spina bifida.

Now take a look at the photos below – they are just a fraction of the individuals born with spina bifida that I’ve photographed in the past four years. We can sit here and discuss prevention and folic acid – but the reality is that 30% of the population has taken folic acid and they still have children with spina bifida. And guess what? To our community of families affected by spina bifida a more important thing to worry about than folic acid is promoting a community that will support the families affected by this birth defect.

If you’d like to see more hopeful images and reflections of spina bifida visit the Redefining Spina Bifida facebook page.

Yes, I admit…I feel like the worst mother in the world for considering giving up on my child’s life. If you are in this position, please know that you are not alone. I have been there and I shared my open thoughts during Chance’s pregnancy on my blog. Sharing my thoughts openly lead quite a few people to think less of me because as I learned all of the complications that my son would be born with – I was scared and wished I could give up and start over. I was frightened of the unknown and wished for a healthy, perfect newborn baby. Little did I realize then that my baby would be born perfectly made, even with the birth defect spina bifida. Sometimes it takes time to understand that we can’t really define “perfection” until we experience it first hand.

Any mother who faces a spina bifida diagnosis (or any adverse diagnosis for that matter) should not be scrutinized for having fears, worries or wishing she could give up because to be honest…raising a child with spina bifida has not always been “amazing”. I had my moments when I was pregnant where I wondered “how am I going to do this? how are we going to raise a child with spina bifida?” I was worried how we would be able to care for a child with significant needs. So let me reflect as I pray to help those mothers who have aborted or who may be considering giving up – because though there is so much hope – I DO understand how easy it is to want to give up when all you learn about spina bifida are the things that are “wrong” and the medical challenges a person may face.

I learned our son Chance would be born with spina bifida when I was 17 weeks pregnant. I feel blessed that during the diagnosis my doctors were so supportive and never once encouraged termination, however, I was informed it was an option. When I first heard the words “spina bifida” from my doctor she told me “do not google spina bifida” and went to say that anything I’d find online would scare me. Instantly I was worried how much might be wrong. The very next day we received the official ultrasound diagnosis showing all of the key indicators for spina bifida – the defect in his spine, the banana sign and the lemon shaped head inutero. I knew something was wrong with my baby but I didn’t understand just how “bad” his spina bifida might be. And I desperately wanted to know anything and everything I could learn about spina bifida so that we knew just how much we were up against. I remember wondering “what would his life be like?” We left the doctor knowing that we had some tough days ahead that were filled with a lot of tears as we were left with trying to understand his condition, something even the doctors couldn’t predict. Every doctor we spoke with said that we wouldn’t know just how significant the challenges would be until he was born.

Over the course of the next few weeks after receiving the diagnosis I cried. I prayed. I read anything and everything I could find about spina bifida and hydrocephalus. I learned that googling the topic would lead to horrifying search results. No wonder women wish to give up when most of what is found on google, especially google images, are horrifying images of babies before they had their back closure surgery and of babies with hydrocephalus with enormous heads that looked like something out of a sci-fi movie. No one should ever have to see such horrifying images and this is not what the world should have to relate spina bifida or hydrocephalus to – because if a spina bifida patient gets adequate medical care they CAN lead a long and healthy life and go on to fulfill great roles in society.

Although I don’t think I need to justify all of my reasoning behind our consideration to terminate. I do now think it’s time to write openly – to help future mothers who may go through these challenges but to also help the many families who have followed Chance since before he was born. After the diagnosis I was avoided like the plague. Our family and friends were in shock – and as I tried to talk about all we were coping with most people had a tough time discussing it because they not only were heartbroken…but so many said “I don’t know what I’d do if you were in your position”. Or I had some said “I don’t think you want to know what I’d do.” Yes, I wanted to know….because we were at a loss for what to do. No matter what choice we decided we were guaranteed it would be challenging and would bring heartache. You see, though we had begun to learn so many families felt their children with spina bifida were blessings – we were frightened of the challenges and we did not want our child to experience pain or suffering – and we were afraid of he unknown. We didn’t know how amazing his life could be, until he was born.

One of my dearest and best friends who I’ve known for over 15 years called me a few days after the diagnosis. She was the friend that was there through so much of our heartache (we experienced 3 miscarriages over the years) and I could always rely on her to give me her honest, yet caring, opinions. She shared with me that her own mother was born with spina bifida. She asked me if I wished for her opinions – and of course, of all the people we can trust and wish to share their thoughts with us…our friends can help us. She said if she were in my same position that she would terminate. Instantly I thought to myself, “how on earth? your own mother had spina bifida?” She shared that she grew up watching her own mother experience the challenges of spina bifida and shared some of the things she experienced. She went on to say that she had seen our family experience enough heartache and that she knows having a child with spina bifida would be hard and that she just didn’t want me to hurt anymore. It was the first time I truly thought “I can’t do this”. For the next few weeks we seriously considered termination. I read countless resources, even research studies from years past that showed similar thoughts – that teens living with spina bifida would suggest their mother abort if she was to become pregnant with another baby with spina bifida. Yes, it’s sad that research projects like that even existed. Even after meeting with a genetics counselor I was informed that the termination rate is suspected to be 50-80% for babies with spina bifida. All I could think was…there’s a reason why so many people are giving up, but really, why? Why are so many families giving up? Even if they don’t give up, why are women (like me) even considering it?

As I tried to understand my options and so many refused to share their opinions I reached out to the spina bifida community but also to our friends and family and asked for their opinions. I learned really fast that asking for opinions about “options” are not the best thing to do, especially with those who have babies with spina bifida. The survey of my options was nearly a dead tie – and if I can be honest, after talking a lot more with my friends and family through emails and phone – so many were accepting and even admitted if it was them…they didn’t know how I’d continue the pregnancy and that I should terminate. Some of our family who even have a connection to the medical community admitted terminating their own pregnancies for personal or medical reasons and some said they didn’t know how they’d be able to care for such significant medical needs such as the potential need to catheterize a child. It was sad, but it helped me understand that our family understood our fears. So I have no doubts these numbers in this poll are so evenly divided because the moment I shared it – it was seen by most mothers online who had a child with spina bifida. I felt attacked – as they all desperately wanted to help me see that spina bifida was a condition that was manageable – and that my child would amaze me. But when you’re pregnant I admit – its so hard to see past the worries and challenges that we learn about the birth defect to see the optimism in the diagnosis. Sadly majority of people who saw this survey felt it was my “justification” to terminate – when really I was scared to death of the diagnosis my son was faced with and prayed for others to share their opinions of what they’d do if they were in the same situation.

After sharing that survey I had several mothers who had aborted their baby with spina bifida message me. Sadly they were all told such “bleak” outcomes and many were even advised to terminate. Now four years later, I’ve heard from and met so many families who have nearly the same story. They either were advised to terminate, were told only the worst outcomes, or just could not find the hope to continue their pregnancy. It’s sad that there’s not support for those who experience a prenatal diagnosis of spina bifida. The fact that this is still happening in 2015 is evidence that there are still big challenges with the spina bifida diagnosis.

I am not one to question a person’s beliefs regarding abortion – nor is that the point of writing this. But I can tell you I understand the strong emotions that arise when you feel your baby may be born with an adverse condition like spina bifida. I don’t think most really “get” what goes through a mother’s mind as she may be considering her “options” after the diagnosis. It’s sad that when a woman is vulnerable and wishing for support – that if she speaks openly about this topic of termination that she’s instantly perceived as a monster. If you are a mother considering giving up, I assure you – you are not a monster for wishing to give up when you fear all of the things “wrong” with your child…but yes, I too pray you will find the optimism like I did. Here’s one of many cruel comments I received in 2010 after I shared my thoughts – ironically this comment was posted to one of my photo sessions not related to spina bifida…so really I had quite a few people who were angry at me. In fact there were people in this world that hated me for sharing my fears so openly.

I do remember so clearly the day we visited Chance’s neurosurgeon for the first time. My mind had already been circling with thoughts about our options and as I struggled to understand so much I spent part of the day thinking through a mindmap that will help you see the exact thoughts that crossed my mind the day that we nearly gave up. We were told the neurosurgeon is the one that brings all families hope and that they can help a family understand the specific challenges a baby might be experiencing based on the ultrasound and MRI images. So if you are out there wishing to bash a mother for wanting to give up – I hope this helps you see a glimpse into the feelings many mothers experience when they face a spina bifida diagnosis. I not only feared how many medical challenges Chance would face and how significant they would be, I feared the costs of raising a child with spina bifida, and how it would impact my family and my career. I know that if a woman considers termination – it is not because she is a cruel heartless monster. Every thought on these mindmaps was written through tears – as I tried to deal with the internal battle of whether or not I would continue our pregnancy with Chance. It hurt so bad knowing that I could easily understand all the reasons I wanted to give up, but never once did I want to give up on my child’s life.

We sat down with Chance’s pediatric neurosurgeon and all she had was optimism. She had cared for countless spina bifida patients and said there is so much hope and as we struggled for answers regarding his specific situation – she ordered a fetal MRI so she could get the most accurate look at his “defect” – this image reassured us that we were in a “best case scenario” that his opening was small and low on his back, leaving him with potential for a good outcome – but we were told we would not know how much he would be affected until he was born.

Do you want to know why so many women are terminating or considering terminating a child with spina bifida? All they can find online is horrifying and what they are provided by medical teams is outdated and does not bring hope. Here’s what our doctors and genetics counselor provided us – most of these handouts were decades old – with the oldest one dating back to the 1980′s.

No mother should be receiving 30+ year old resources for support. Some of these resources said our child’s life would be very challenging and that we wouldn’t be able to do normal things, like travel. It’s unfortunate. Sure there may be some medical information in this material – but all it made me fear was “there’s too much wrong with my child”. Seriously, if you are sitting there worrying that you can’t do this because you’ve just gotten the diagnosis I “get” it – because us parents have received nothing more than “medical jargon” that only scares a parent more. Yes, I pray the doctors please tell us what is “wrong” to help you understand spina bifida better – but I pray those in the medical community who have contact with newly diagnosed patients can help humanize the diagnosis. Often times those that have the knowledge and ability to can’t bring hope until it’s too late. It’s time to improve the resources for expecting parents so that their diagnosis is more humane – so that as they learn of all the challenges their child may have – they are able to see the hope.

If you are considering terminating your pregnancy due to a spina bifida diagnosis I have a few words of advice that may help you. I can’t make your decision for you, it’s obvious what I chose – I hope you too will find the hope to be reassured that raising a child with spina bifida is possible…and honestly, it can be a life changing and amazing experience that you will come to appreciate – so here goes, I pray this helps you if you are torn with these “options” you were given:

• Avoid googling the topic, especially google images – it will only scare you and I can tell you firsthand that most of what you can find on google is NOT a real outlook on what life with spina bifida is like.
• Read the resources on the spina bifida association’s web site for newly diagnosed families. SBAA is one of the best resources to learn accurate information about spina bifida.
• Contact a pediatric neurosurgeon immediately and schedule a consult. Seriously, looking back now – I wished I had called her the same day as the diagnosis so that I could have spared myself so much of this heartache. She helped me understand spina bifida and what we had ahead so much better.
• Contact your local spina bifida clinic. Typically the clinics are lead by nurses who care for many children with spina bifida, in fact – that’s their job – to care only for children with spina bifida and to help manage their care. They have become like family to us. They can help you understand what spina bifida is better.
• Contact your local spina bifida association chapter or support group closest to you. This will help connect you with other families who are affected by spina bifida and to be honest, they are the best resource you will have besides your child’s medical team. Our spina bifida community has become like family to us as well – they will be there when the most challenging things happen, things that often times your own friends and family may never understand.
• Connect with a spina bifida group online – facebook has many (search for united by spina bifida, take that spina bifida, Expecting & Considering Fetal surgery for spina bifida, or the  sba facebook parents group). As you have questions parents and adults affected by spina bifida are helpful in answering questions.
• Go follow the new Redefining Spina Bifida facebook page. Several photographers have teamed up with me to share images of individuals affected by spina bifida – praying that can bring you hope. But also praying that it will also help you see what life with spina bifida is really like.

I don’t want to sugar coat a spina bifida diagnosis. I won’t lie, raising a child with spina bifida is not easy. In fact, we’ve faced a great deal of adversity. In nearly four years of life Chance has endured 12 surgeries, has spent six weeks of his life in the hospital and has been in hundreds of doctors appointments, tests, and therapies. Most days we don’t even think about spina bifida – because he really is like any other child his age. He’s smart, adorable, strong, and has the best smile. But he does have challenges that have no “cure” – because you see when you opt to continue with “life” you are agreeing to a commitment that you will be there for your child for “life”, and really how is that any different than being there for any child (with or without spina bifida) for life? Most days he amazes me and makes me smile – but there are still days that I find myself overwhelmed and even asking myself “how are we going to do this?” But I will tell you that choosing life and giving our son a “chance” was the best decision for our family and one I am glad we made. He’s taught me so much about life – surely that chances are worth taking – but he’s also redefined my perception of perfection.

For those of you who may consider giving up on your child due to a spina bifida diagnosis, I can assure you of a few things. You are NOT a monster for having fears that make you wish to give up. You CAN do this – raising a child with spina bifida IS possible.  You know what’s amazing when you face such a tough decision – it WILL change your life…no matter which decision you make. For me, it has been so tough AND so amazing. The mother who was once perceived as a monster by so many people who followed my thoughts on nearly giving up now spends a considerable amount of time volunteering to improve and transform the world’s perception of spina bifida. No, we can’t take away the challenges our kids may face in life – but we can help so many mothers see the light and help them see that their child’s life IS worth it. We can help doctors better understand spina bifida so that they help families make informed decisions. If you are considering giving up on your child diagnosed with spina bifida I understand, because I was you just over four years ago. If only I could go back in time and know what I know now. Having a child with spina bifida isn’t the end of the world – in fact, it will change your world for the better regardless of how many challenges you child may endure. I hope somehow this has reminded you just how amazing “chances” can turn out to be.

In the past few months we have struggled with this decision – to give in and request a wheelchair for you. Before you were born we knew you would be born with spina bifida. We knew you would likely experience challenges with your mobility, but we prayed every day that you would be born perfect. We prayed that nothing would be wrong. We prayed that you would be able to walk. We prayed that you would never need braces, a walker, or a wheelchair. We wanted none of these things for you because before you were born we feared how we would be able to care for a child who might not walk. For the longest time we refused to think about if you would ever need a wheelchair, because to be honest – we prayed you would never need one. We’ve worked so very hard to help you learn to walk – I don’t think most realize just how tough this is for you to do independently.

We prayed by now you would be walking independently. We feel you are so close, but even with the progress you’ve made it is beginning to get increasingly more challenging to get around and it will likely always take you several times longer to walk from place to place. Something that takes an average person 1-2 minutes to walk to do, it takes you 10-20 minutes. Most people take for granted the simple act of walking…it’s an effort that is something you have to work very hard to do.

Before you were born we were so frightened by the things that might be wrong with you. We didn’t realize just how amazing you would be. Chance you have amazed us. Not just our family – you have amazed a world of people. You’ve helped me realize that my own view of perfection was so far from what it should be. You are so incredibly perfect in your own ways. I’m beginning to learn that my own view of perfection isn’t always the same as God’s perfect plan…for you – and for our family.

Now that you have your first wheelchair I find myself needing to pause to make sure you understand what this wheelchair will mean to you and to our family.

This wheelchair will not mean you will never walk independently. You’ve already wow’d us with how great you are doing with your walker and braces but we’ve begun to accept that some things take you a little longer (sometimes a lot longer) to go from place to place. There will be times we can take our time and allow you to walk and explore and there will be times we will need to resort to using the wheelchair to get to places on time.

This wheelchair does not mean we will give up on walking. We will continue to push you at home and in therapies to help you get as strong as you can possibly get. You have worked so hard to walk with your walker and we push you to try your hardest to try to walk independently. We don’t know if or when that day will happen, but we trust God’s timing and his purpose. The most we can ask of you is to continue to try to do your best.

This wheelchair will probably be fun for you but don’t ever let it be the thing that makes you wish to stop working so hard to reach your goals. You’ve only had your chair a day and you’ve already learned to do wheelies and 360 turns. We have seen your smiles and joy using your new wheelchair in the brief time you’ve had it . We are so happy this may help you have more fun and not feel held back by your mobility limitations. The laughter we’ve heard in the past day helps remind us that this wheelchair will not only help you move around as you grow but it will help empower you to do all the things you wish to do when your legs may not be able to do as much as you wished they could do.

This wheelchair will give you a great deal of independence. What we want more than anything for you is for you to grow to learn to move around independently as all other kids do. The reality is you aren’t getting any smaller and as you grow up you’ll soon be too big for us to carry – we need to make sure you begin to learn how you will be able to move around to do the things you wish to do in life.

This wheelchair will be a big transition for us all. We will begin to learn ways to push you to keep walking but will learn when you should use the wheelchair to ensure we can move from place to place without overtiring you or us. We want you to enjoy life and we want to give you options with your mobility as you begin to get older. We suspect that no matter how much you enjoy your new wheelchair that there will be times you will want to walk on your own.

This wheelchair does not mean something is “wrong” with you. I suspect as you grow older you may begin to have people who see you with your walker or wheelchair and they may ask us “what’s wrong”. For some reason society views a walker or a wheelchair as meaning something is “wrong” with a person. I recall before you born the first time I had learned of spina bifida I viewed both as a bad thing…I too feared that something would be “wrong” with you. Yes, you were born with this birth defect that has brought so many challenges into your life…but I have to say you have the most perfect soul and for that we are blessed. You keep that spirit up and continue to show the world that there’s nothing “wrong” with you…you just happen to need a little extra support moving around. This determination that you have is part of what will continue to amaze us all.

Chance there isn’t a day that goes by that I don’t wish I could find a “cure” or a way to “fix” all the challenges that have come with you being born with spina bifida. Long before you were born I wished that if you had to be born with spina bifida that we’d be spared the biggest challenges. Unfortunately the reality is we can’t make your spina bifida or it’s challenges go away…the most we can do now is support and love you and help bring you as many opportunities that will help you grow stronger and become a more independent person. This wheelchair won’t be the thing that defines who you are – but we suspect it will be something that will create an amazing new perspective for you in the years ahead. If it’s needed to help you chase your dreams, then so be it. There’s no doubt you are one determined child Chance…and surely you will achieve many more great accomplishments in your lifetime.

Continue to inspire us kiddo…we’re all here cheering you on.
Love always,
Momma

A week before Kennedy was born Shannon & Craig met with me to capture a few final moments as they waited in anticipation to meet their little girl. Looking back now these photos are so special and capture their strength, love, and excitement to meet Kennedy. I’m so glad now that we made time to make sure we captured these moments.

Kennedy was born on January 6, 2014 and underwent back closure surgery when she was only a day old. I visited them when she was a day old as she was recovering from surgery in the NICU. Because she was born with spina bifida she was born with an opening in her back that required surgery to close to help prevent infection. She is such a fighter and stayed in the NICU just over a week. She escaped her NICU stay without a shunt and is doing really well. She is still being monitored closely for the typical spina bifida neurological, bladder/bowel, and orthopedic concerns that she will be cared for as she grows.

Kennedy visited me when she was just two weeks old for her newborn photos. Aside from my son Chance, Kennedy is the fourth newborn born with spina bifida that I have photographed. It is a unique challenge that I don’t think any photographer will every truly understand until they work with a baby with spina bifida. She was a sweetheart who was fairly alert and content throughout most of our time together. I felt blessed that she was still pretty curly and somewhat sleepy…though she sure was curious and very aware of every little thing we did. In addition to being very cautious working with her because her back was still healing – living with spina bifida usually leads to living life with a neurogenic bladder and/or bowels due to the nerve damage – so this certainly made her newborn sessions a little more challenging. But we managed to take some pretty breathtaking shots that help capture a some of her sweet spirit.

My son Chance was born close to 3 years ago with spina bifida…now that he’s a little older it’s cute to see his curiosity as I take on newborn sessions. I suspect he knew Kennedy was quite special to us, because she was born with spina bifida just like him – so I bet it’s only a matter of time before they are playing and having fun together with the rest of our spina bifida family.

It is always good when families bring a relative to help, especially grandparents. Kennedy’s grandmother was in town visiting and joined us during Kennedy’s session. For the last shot of her session we hoped to capture her in the Minnie Mouse outfit one of Kennedy’s relatives sent for a gift. Their family really adores Disney so it was pretty special to them, unfortunately Kennedy was a little too tired at the end and just wanted to cuddle and any time we tried any pose she fussed. So she spent some time with Grandma and she was such a huge help in calming her down enough for me to work with for her Minnie Mouse shots.

I’m sure this will be one of her family’s favorite photos…Kennedy, we sure did work  hard to make sure you looked this adorable. I hope years from now this helps remind you of your very special beginning and helps remind you of how loved you are.

Shannon & Craig I hope you both enjoy all the photos…thanks for being so proactive to help our spina bifida community long before your little girl was born. I hope in these few short months since we’ve met that this time has helped reassure you that no matter how challenging the moments raising a child with spina bifida may be, that you are always reminded that you have another amazing family here that will do what we can to support you all through all the uncertainties of spina bifida. Best wishes to you all…Kennedy certainly is another sweet little spina bifida miracle that I feel incredibly blessed to know.

Meet my little friend Jackson, one of the few people who joined us on Team Chance this past weekend at the Walk-N-Roll for spina bifida to support our baby boy.

Jackson’s one lucky kid…he just happens to be the son of one of my awesome doctors. His mother has made a pretty big impact on my life…sure, partly because she was the one who had to let us know that Chance would likely be born with spina bifida…but also over the last two years as we’ve went through so much it seems that every time I’d look up she was there helping me find peace and reminding me that we’d be okay. Yes, I truly believe there are angels among us…and surely, she’s been one in my life the last two years. About two years ago I was still pretty devastated knowing Chance was going to be born with spina bifida…but now I’m reminded that because of him I’ve been surrounded by some pretty amazing people, like Jackson’s family.

The week before the Walk-N-Roll I met with thier family to capture a few memorable moments with them. Jackson’s got quite the personality and though his older brothers are a tad bit more serious…they were pretty darn amazing too. I’m pretty sure you all will enjoy a glimpse of some moments from the time we spent together…there were definitely plenty of memorable moments that still make me smile.

Jackson, thanks to you and your awesome family…I loved every minute of our time together. Be sure you thank your momma for me too…I can’t say thank you enough to have someone so darn caring there for me & my family.

I’m excited to announce that the What to expect series has generously teamed up with me to offer one of my followers their series of What to expect books. The winner will receive one of each of the following books: What to expect when you’re expecting, What to expect the first year, and What to expect the second year. The series of books is great for all new or expecting parents.

TO ENTER THIS GIVEAWAY you must follow Amanda Kern Photography publicly, and leave a comment on my blog telling me which book you benefit from most. Please include your email in the email field so I have a way to contact you. You must do this before you complete any of the extra entries! Even of you are entering for yourself and your little one is almost a year, remember, something tells me you all know someone who is expecting. Be sure to spread the word and encourage your friends to enter as well.

EXTRA ENTRIES – leave a comment on my blog telling me which of these you have done. For each thing you’ve done you will have a separate entry counted into the giveway.

• Like Amanda Kern Photography on Facebook
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This giveaway will end August 10th, 2012 at Midnight. Good luck to everyone!