Photographer, Educator, Student, Mother & Wife Obsessed with sharing moments through pictures & words

Lily’s newborn moments

Sunday, March 1, 2015

If you’ve been keeping up with my work on facebook, you may have seen a few of these photos earlier this year. I began 2015 meeting the sweetest little newborn, Lily. She has such a timid little soul and her parents were beyond amazing and patient as we worked through capturing her newborn moments. I’m just now getting around to catching up with sharing some of my favorites as I have a lot of new work to share. Brian & Heather I hope you enjoy all the moments we captured earlier this year…I can only imagine how much Lily has grown since these moments were captured.

Photography

by Amanda Kern

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To the mother who is considering aborting her baby with spina bifida

Saturday, February 7, 2015

Over four years ago when we considered giving up on our son Chance’s life, I wrote openly about the emotions and decisions we were faced with. In part it helped me cope but I also did so for support. Instead, majority of the responses lead an attack that helped me realize just how touchy of a subject this is. So I write this with the hopes to reflect and shed light on our past as I pray this post will someday bring other mothers who are considering or have aborted a baby some hope and a better understanding of spina bifida. Spina bifida is the most common permanently disabling birth defect that comes with many complications – but rather than sharing all of it’s potential complications – you deserve support. You need to know it’s okay to have fears – and that raising a child with spina bifida is possible because though you may be considering giving up, you don’t want to give up.

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.

spina bifida, Updates

by Amanda Kern

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June 9, 2016 - 9:53 am

Corey - My wife and I was notified yesterday that our son will have spina bifida. Test show that our son apparently has one of the serious cases of spina bifida. Reading this has helped a lot and to also show that we aren’t alone. We have the same tough decision to make.

July 7, 2016 - 9:01 am

Debora - Congratulations for the post Amanda, I think the world needs a lot more people to enlighten the great potential of kids with spina bifida and other conditions. I went through the same situation that you did, also feared so much, but also wanted so much to keep my baby. Like you, I also looked for every single updated piece of information I could get, and I was also advised to consult with a paediatric neurosurgeon – we were lucky to have an extremely reknowned and competent one. Only in my situation, the MRI looked completely different from your case. Whereas he reassured us that individuals with SB had a great potential and so much progress had happened in improving their quality of life (even commenting that one of his best friends, a University professor, had spina bifida), he also told us that unfortunately ours was a worst case scenario. He said the damage to the brain stem caused by the Chiari II was so severe that it was almost certain that our baby would not be able to breathe nor eat on her own among countless other severe impairments. He said that, contrary to the vast majority of cases he had, he expected her to live only for a few days (even with all hospital assistance) or for a couple of years in the best case scenario for her. Facing that, we decided to have a termination, and we do not regret it. Based on the best and most accurate medical evidence, we would have to watch our daughter agonize until she found peace in a very early and cruel death. I don’t share this here to discourage those mums faced with this impossible decision, just the opposite: before this MRI, I was resolved to raise this child and to fight for her, and even now that I don’t have her, this cause became a fight of mine. I totally agree with you that the information given to parents is precarious: our paediatric neurosurgeon said that only a few per cent of parents look for this kind of specialist advice, and most seem to decide right away after the first diagnosis, without further investigation. After living what I have lived, I am past feeling comfortable in judging people for whatever they decide – as long as this was a really informed decision.

September 3, 2016 - 2:07 pm

Beth - I was never upset with you for considering termination. It was the taunting of the sb group and your poll. Your poll. Then you named him chance. I see you’ve come around a little, but wow. You came and told us that women messaged you wishing they’d aborted.

October 22, 2016 - 3:58 pm

Dale Prince - My wife and I just learned as of this week at 22 weeks that our son has Spina bifida with hydrocephalus. She’s so worried about our own relationship at this point and cannot focus on what matters with this child. I’m totally set on fathering this child and have made contacts with Houston Texas Children’s for fetal surgery. I’m so scared that she’s going to choose abortion rather than life.

November 7, 2016 - 6:46 pm

Mikasta Moody - As a wife of a man who has Spina Bifida I have learned from him that his life hasn’t always been eady. He’s had pain, surgeries, and other issues but he has also had a happy, fulfilling life, is a sports buff, and has even played some basketball. Personally, I’m happy he has had a chance at life.

October 31, 2017 - 7:33 pm

Ashley lange - Are you still available to help me?

May 27, 2018 - 10:00 am

Leah - As a mom of twins one of which has SB I would add another useful tip.

Find support.
Join a Internet support group or meet up with other SB kids and families in your area.

May 27, 2018 - 10:15 am

Leah - I found a BabyCenter group of SB parents. It’s been useful over the past two years after diagnosis day. They have been the best resource for our family apart from our medical team who have taken care of our daughter with SB. I didn’t bother to call our SB clinic or local chapter of our SB association because the information is woefully inaccurate.

Plus information overload. FS was not a option for us and I briefly considered termination after diagnosis day. Our little gal with SB and clubbed feet is a bright and healthy baby. She is exactly like her twin brother (Laurel’s partner in mischief making). Both of them are currently 18 months old now.

As her mom I am amazed by the love and support she inspires amongst our extended family. Coworkers who have met my children are always amazed at our little gal and what she can actually do. She has some physical impairments but I feel she is on track with her cognitive and speech development.

Her small motor skills are assumed to be above average as well. My partner worries about her but I reassure him she will be fine.

May 3, 2023 - 10:57 pm

Laura - Hello thanks for the information we were just informed our baby boy has spina bifida
Wow what a wave of emotions and processing my 1st scream was how am I going to do this? We are in the process of considering the MOM surgery end of this month. But boy and I’m I scared and I feel like there’s so much information

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Continuing to live with the uncertainties of spina bifida

Saturday, January 31, 2015

It seems like forever since I’ve shared an update about Chance on my blog. I know so many of you care about our boy given all the things he’s been through. Periodically I have tried to share brief updates on facebook, twitter and instagram – but they don’t compare to the update I am long overdue to share. I admit so many of the thoughts I’ve been learning to adjust to and many of them are personal thoughts about Chance’s care. I know many families have varied beliefs on how much they share publicly…I pray in sharing this update that our family and friends feel more updated about our little guy and that somehow we may help another family affected by spina bifida. I know some people may fear how their child may feel about sharing personal updates..and surely we hope to raise our child not to be ashamed of these differences in his care as he grows – they are part of who he is.

So first, here’s a sweet moment with Chance at the end of 2014 just before therapy. For those of you wondering how life has been since he’s gotten his wheelchair – he loves it. And he is pretty independent in it’s use about 99% of the time. We’ve learned to watch for bumps (he’s fallen twice due to silly bumps in the sidewalk) and he’s continuing to learn to transfer in and out of it on his own. We primarily use it in times when we wish for him to be independent and know the distances are too far for him to walk with his walker. He does still fatigue walking with his walker after short distances.

Last August he went through a lot of tests to check on his health. Thankfully since then his health has been fairly good so this month he only had to go through one test, his renal ultrasound to check on his kidneys. I feel so blessed that as he grows he’s beginning to mature into a great little kid. I have memories of him screaming as a baby through this relatively simple test – and now he is so well behaved.

Overall we have a lot of updates that we really haven’t spoken too much about publicly. First of all, his shunt and neurological health are doing great. Last August he went through a sedated MRI to check on his spine and brain and his shunt is working well. He had one scare in October where we could see his shunt tubing through his belly and began to get sick – we spent an evening in the ER and learned his shunt was doing great…but he had a pretty significant case of constipation – something that is common with individuals living with spina bifida.

At the end of last June Chance had a really serious urinary tract infection. It was that bad that he was hospitalized for 4 days. We knew they could happen and he had minor ones in the past but this one was rather scary. It started with stinky pee. And a few days later he woke up just seeming tired and not himself. Normally he is full of energy during and after a swim lesson, but he was super fatigued, began to get sick and ran a high fever fast. By that afternoon we were in the hospital and praying they’d figure out what type of bacteria he was fighting – it took 2 days before they determined that he was fighting an infection that didn’t react to broad spectrum antibiotics. We went home and within a month later he began to get another UTI, thankfully much more minor.

By August he underwent a urodynamics test. It’s one of my least favorite tests to see him go through. Essentially they catheterize him and push fluid into his bladder to see how much it will hold and they attach sensor that can show how his bladder reacts and at what point it feels pressure and causes him to use the bathroom. Yes, it seems very invasive – but thankfully he tolerated it well this time. It’s still tough to gauge just how much he feels and can control so these tests are necessary to help the doctors understand how his bladder functions. The test showed that his bladder can hold 150cc but that it begins to indicate “pressure” at 100cc meaning he is likely not emptying completely (which causes UTI’s) and that he’s likely to “leak” at some point after he reaches 100cc. That test along with the two most recent UTI’s this past summer were the indicators that brought the decision that we were fearing. Our little man now needs to be catheterized. It is something that he will need for life. We can pray for a miracle that his body will adjust and change and he’ll be able to control these things – but the reality is…majority of children with spina bifida require intervention to help manage the care of their bladder and kidneys. If we neglect this care we can not only create damage to both but it could prevent him from achieving continence and independence in caring for these needs. We’ve been told by many that the earlier this care begins the easier it is for him and that he will resist it less. In September we began catheterizing him every 3-4 hours during the day. Right now this is the plan of care that will help us keep his bladder and kidneys as healthy as they can be. Thankfully he has been amazing as we’ve transitioned to learning to provide this care to him. He’s already showing an interest in helping which shows us promise that in time he will be able to do this care on his own.

This past summer Chance also began to show signs of constipation. We began him on miralax again, but even that wasn’t enough. There were times over the past six months that he’s went 3, 4 or even 5 days without a bowel movement. Constipation can be worrisome for a person with spina bifida because it can impact them in so many ways. The symptoms are similar to a shunt malfunction in that it makes him sick. We’ve lost count of the number of times Chance has gotten sick over the past six months. It can impact his shunt and even lead to a malfunction – we were concerned in October because he was that backed up that we could see his shunt tubing protruding from his belly. And if constipation gets bad enough it can cause an obstruction which could lead to surgeries. In the fall we saw the GI doctor for a follow up appointment and we agreed it was time to begin the process to intervene and begin his bowel management care plan as well. Just this past week we began the cone enema – yes, something I never wanted to have to do to my child. All of these things that are such personal parts of his care…are things we prayed we could avoid and not need to do. But now they are necessary to keep him healthy. Our next goal is to work towards keeping him continent and then helping him reach independence. We are still very early in this part of the journey but we are hopeful it will help our boy. The plan is to do this routine every other night, which involves more than a half hour of waiting in the bathroom with him. But the upside of it all is that it’s highly likely he will stay clean in between – which will be so important to us as he grows. We’ve been told by so many other families that of all the challenges…the bladder and bowel care are among the most challenging things to deal with. Thankfully his GI doctors are proactive and they’re prescribing a newer system called the peristeen that is believed to be more likely to help him become independent in this care too. If you are wondering how long he will need this care, it is much like catheterization…in that he is expected to need intervention for life. We pray maybe he will prove otherwise, but there aren’t many living with the type of spina bifida he has who manage without some type of bowel management care plan.

This past Friday we met at the spina bifida clinic for his bi-annual clinic to discuss his care. I had suspected a week or more before that he might be brewing a UTI…if you see this photo you can see he wasn’t feeling 100%. He had a low grade fever this day…which lead us to more tests to check and make sure he had nothing serious going on. Thankfully the test came back inconclusive of any serious infections that needed treatment. It was that reminder that at any given point his health can change – and I was thankful all of his doctors agreed to be proactive and test to make absolutely certain it wasn’t a serious infection.

Chance was adorable at clinic…he rolled in and out of his room and played on the nintendo most of the morning. This photo below was taken just after we met with the orthopedic doctor. He’s met with more than one in the past month. After getting his most recent braces we realized that the measurements seemed a bit different and that one leg might be slightly longer than the other. So Chance was looking at the x-ray of his legs – that have been analyzed a few times as the doctors, orthotist and therapist decide what we do. We’re hopeful that it’s just a minor difference – but it’s possible that he may require a lift under one shoe so that he’s level. Thankfully it’s not a huge length difference and we’re working on trying to adjust things as this little guy of ours grows so fast. The doctor we saw at clinic felt the difference was so little that nothing was needed but began to look closer at his hips and back. Thankfully his hips are still healthy and not dislocated (which happens to some people with spina bifida) – but it was noticed that he does have mild scoliosis. I knew it was possible…but it was the first time I had heard it be a potential thing for us to keep a closer eye on. The doctors will be doing a test to take a closer look at his spine before his next clinic in about six months.

Yes, I admit these recent changes over the past few months have been a lot to accept and transition to. I feel quite blessed that Jason and I are able to juggle differing work schedules to make sure one of us can always provide this care for Chance. Of course we both feel blessed that Chance has two of the best siblings…Jaylen and Hope continue to be so loving and protective of their little brother. They realize how much he is growing and I’m sure are beginning to see how much his care is changing – thankfully they have been the most loving siblings as we go through so many of these changes with Chance together…and that in itself is the best reassurance for us to have, to remind us that we will make it through every challenge together.

Chance continues to do therapy at Arnold Palmer Hospital weekly for an hour each week. As he grows older he has begun to respond better most weeks. Some weeks he can be a little stinker and resist therapy but most weeks he shows his silly side as we try to make therapy fun for him.

This past fall Chance received his new braces that bring him a bit more support. We’re hopeful these modified HKAFO’s won’t be needed forever – but he needs this support, otherwise he buckles easily at the knees and hips. At the end of last year he showed off his standing abilities with his walker…yes, he can lift his walker for a few seconds when he’s wearing these. He has stood for 10 seconds independently and has taken 5 independent steps with these new braces. Unfortunately he has a lot of balance issues and so most times he looses his balance in a very short time, even with the new braces.

As we await his new forearm crutches to arrive, he’s spent time at therapy using various devices including various types of walking sticks and canes to learn to walk. He has taken several steps more confidently without losing his balance as easily with a cane like he’s using in this picture.

He’s also showing more confidence to take steps as we hold just one of his hands. This is one of my favorite pictures taken of him in 2014 (yes, one of hundreds, lol). It was taken on Thanksgiving as his big brother Jaylen was helping him walk from the couch to the other room. We are so blessed that our kids have such big hearts to help their little brother when he needs them.

Chance has been swimming with Harvey Barnett, the founder of ISR, since May of last year and it’s been such an amazing experience for him. It may be helping him learn to swim and learn survival skills but I’ll be honest, it’s like therapy for him and it truly has helped him become so much stronger this past year. In the pool he will stand on Harvey’s hand now for nearly 90 seconds. I documented all of his swimming this year in a book that you can preview the entire book online – it really has been an incredibly beautiful experience to look on for our boy. Chance was also featured in a short news segment in September – if you haven’t seen it you can view it on WFTV’s web site. We’re incredibly proud that our boy has helped inspire so many other children with special needs to have an interest in swimming.

We’re at this point that we see Chance is so close to taking off independently with walking…but his little legs just don’t work the same. He works so hard at therapy and we continue to pray he will be able to gain the strength to stand and walk independently.

We learned of a private therapy group, Believe Therapy, that other families affected by spina bifida have used. We learned they had some openings before the holidays and elected to invest some of our HSA medical funds into helping our boy. The challenge for us in using this therapy is that it is not covered by insurance so we have had to pay out of pocket the full amount. But we agreed it was worth seeing how he would do and try them out. I’ll share just a few photos, but I have to say that the experience has been pretty amazing. They have different ways to engage the kids and can isolate muscle groups. Chance had so much fun nearly his entire time working with them in the 10 hours we invested.

Some of you may have seen on facebook or twitter, but we were that impressed with this new therapy that we’ve opted to try fundraising to help raise the money needed to pay for intensive therapy. Intensive therapy is 5 days a week, 4 hours a day, for three weeks. In addition to therapy he’d need additional separate sessions in between intensive sessions to help sustain his strength – so we are hopeful our family and friends who wish to help are able to do what they can to help Chance’s therapy needs. Since he was born we’ve maxed out insurance/medical expenses and are currently paying more for medical and insurance than we spend on our home mortgage and vehicle costs. If you’d like to contribute to his fundraiser to assist with his therapy needs it’ll be open for 18 more day – here’s the link.

Thank you all who continue to pray for our boy and to all of you who have supported us over the years. We knew this journey raising a child with spina bifida wouldn’t be easy and that his needs would continually change. We know the complexities of spina bifida aren’t always easy to understand…we’re doing out best to understand them ourselves. We hope this update has helped you all understand how life for our little guy is changing…and that it reassures you that he will continue to amaze us all.

Family, spina bifida

by Amanda Kern

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2014 Spina Bifida Awareness Campaign

Thursday, October 16, 2014

“What counts in life is not the mere fact that we have lived. It is the differences we have made to the lives of others that will determine the signficance of the life we lead.” ~Nelson Mandela

For the 4th year I am excited to share this year’s spina bifida awareness campaign for the Spina Bifida Association of Central Florida. This year I met with over 30 individuals living in central Florida with spina bifida to capture moments that will help us make an impact in our local community as we prepare for our 4th annual Walk-N-Roll for spina bifida next week. Over the past 4 years I’ve been amazed and touched by the response of this work – this crazy idea to volunteer my photography to help this community grow and seek support has lead to some of the most inspiring experiences and meeting some of the most beautiful families who are all affected by spina bifida, just like my own. So much of my heart goes into capturing these moments – it’s always an emotional time for me as I finish up this campaign and am reminded that four years ago we had just learned our son would be born with spina bifida. The spina bifida community still lacks so much of the support it deserves and needs to help these families – and so many misconceptions about this birth defect still exist. I may not be able to solve every problem associated with spina bifida – but I’m convinced we can do so much more to help redefine the world’s perception of spina bifida.

I hope you all enjoy this year’s campaign – it truly has been an honor to work with all of our families. We hope you’ll take a moment to take a look at this year’s campaign – I’m convinced you will be as touched as I was capturing the moments.

If you’re searching for the past 3 years worth of spina bifida awareness campaigns I’ve created for the Spina Bifida Association of Central Florida here’s the links:

spina bifida

by Amanda Kern

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Ajala: Another beautiful baby born with spina bifida

Saturday, June 14, 2014

“When you refuse to hide your scars they become a lighthouse for someone else.” ~Jon Acuff

More than a month ago I was informed that a family in central Florida was blessed with a baby girl, Ajala, born with spina bifida. Since our son Chance was born with spina bifida I’ve spent a considerable amount of my heart and energy into helping capture moments with babies, kids and adults living with spina bifida. Many times I meet new families through our local spina bifida association chapter, often times meeting much older kids and adults – but those who know me best know my heart loves newborns. Aside from Chance, Ajala is the fifth newborn I’ve photographed born with spina bifida. I first met her in the NICU when she was a little over a week old. I know so many people in the world view spina bifida as a “imperfection”, because it is a “birth defect” and babies aren’t suppose to be born with all of these challenges that an individual with spina bifida lives with. But from the first time I met Ajala, there was no doubting that she was absolutely perfect in every way…and so incredibly beautiful.

Ajala spent close to two weeks in the NICU recovering from the surgery to close her back. She’s doing considerably well and growing so fast. I met with her family again when she was around 5 weeks old and just adore her precious personality – she made sure to show me early on in our time together that she was a tough little girl as she showed off her muscles as I prepared to take photos of her.

Thankfully she rested for the rest of our time together so that I could admire her beauty.

I suspect this one moment with Ajala may be one of her family’s favorites for years to come – as she curled up at 5 weeks old we made sure to capture the scar on her back where her birth defect was repaired. Many think this surgery is a “fix” or helps cure the birth defect, but it does not make her spina bifida go away. Ajala’s family, like our own, is now faced with caring for their beautiful baby girl and learning how spina bifida may impact their child’s life. She’s doing pretty amazing so we’ll all keep praying for Ajala – I suspect she will continue to amaze us all as she continues to grow.

Mitchelle & Aaron I hope you both enjoy the moments captured with your baby girl. Be sure to reach out if you all need any support at all – you have a community of families I know will be excited to meet your baby girl and are here to help you all however we can.

spina bifida

by Amanda Kern

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Amanda Kern

Lily’s newborn moments

To the mother who is considering aborting her baby with spina bifida

Continuing to live with the uncertainties of spina bifida

2014 Spina Bifida Awareness Campaign

Ajala: Another beautiful baby born with spina bifida

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