To the doctor who believes folic acid can prevent spina bifida and a lifetime of disability

Wednesday, June 17, 2015

I have a child with spina bifida and I admit I’m one of the many parents who has mixed feelings about the folic acid prevention topics – surprisingly this is the first time I’m writing about the topic on my blog. I recently read an article written by Dr. Lance Chilton titled “Folate before and during pregnancy can prevent a lifetime of disability” and feel compelled to share my thoughts on folic acid.

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.

spina bifida, Updates

by Amanda Kern

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Surgery 13: Reflecting on Chance’s recent shunt malfunction

Sunday, May 31, 2015

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

A few days ago we found ourselves remembering just how much uncertainty spina bifida can bring into our lives. Over the past few months we had noticed Chance beginning to gradually show symptoms that were concerning. He was having very brief headaches that would last a very brief time. He began to complain of back pain for very brief periods of time. And at times he would get nauseous. Sometimes spina bifida truly frustrates us because we find ourselves trying to guess and figure out which of the areas could be impacting Chance. We moved up all of his tests, and even had more tests ordered, for earlier this month. We had concerns that it could be any number of things that could cause these syptoms…his shunt, the syrinxes in his spine, tethered cord, a pseudo cyst in his stomach, constipation, or seizures. At the beginning of May Chance went through sedated MRI’s, ultrasounds, an x-ray, and a 24 hour EEG. Most of his tests were inconclusive – his MRI showed a very slight increase in his syrinx in his spine but not enough to warrant us to intervene and his EEG showed added activity on the opposite side of his head and for the first time ever I had to press the “event” button during his 24 hour EEG. We suspected maybe the new activity was his reason for the brief headaches – but that didn’t explain the backaches or sickness.

In his first year of life Chance was always a highly symptomatic child when his shunt wasn’t functioning. Often times he’d show symptoms before tests really would show much evidence of a malfunction – so at the beginning of May we were reassured that we would know if something was wrong with his shunt and that we would watch him closely for more prolonged symptoms and see if the change in his seizures medication helped him. He continued with brief symptoms that made me fear that his shunt might be intermittently failing – Wednesday morning his shunt decided that after 1,325 days of working well to support our son’s life that it would stop functioning. I recall that morning watching Chance closely because he complained of a headache and then slept – and the few times he awoke he was fussy, clingy and restless…when he was awake he was not the energetic little boy we know so well. I took these photos and shared my concerns with his neurosurgeon and prayed once his big brother was home that he’d perk up – a moment later he projectile vomited all over us both and at that moment I knew he was malfunctioning. He was presenting symptoms just like the times he had malfunctioned as a baby.

We arrived at the ER and were taken back to his room quickly – everyone could tell he wasn’t doing well. He wasn’t very coherent most of the time in the room. When Chance malfunctions he is often staring off into a daze and it’s so hard to see him like this. I promised to send his daddy some pictures so he smiled briefly for a photo.

Over the past four years I’ve met so many parents in central Florida and online and the topic of shunt malfunctions do come up at times – I share some of these photos with the hopes it will help you all understand what a shunt malfunction for our son looks like – all kids are different – and many are not symptomatic when they malfunction, however, Chance has always been highly sensitive to pressure changes. If you wish to know what it feels like…think of the worst headache you’ve ever had – and that’s what our little guy was feeling this past week as we waited for his neurosurgeon to arrive.

I share these pictures hoping to help our family, friends and other spina bifida families understand what a shunt malfunction is like for our son so I took photos just like I always do, however, I did nearly have my camera taken from me when I entered the hospital. A security guard questioned my big black bag that I always pack with things that will last me if we stay overnight – and those that know me know that I take my camera with me nearly everywhere I go – especially when my kids are with me. I was told it was “policy” and all I could do was smile and tell the security guard respectfully that I have been in and out of the hospital hundreds of times, even for emergencies, and have never been told I couldn’t have my camera – in fact, I’ve shared our photos openly with the hospital to share our son’s story and have volunteered to help many other families. I was warned that it was policy and that I shouldn’t take pictures in the hospital – all I could do was shake my head and grab my things and escort Chance into the ER. Although I couldn’t photograph every moment we experienced with Chance because things were just so chaotic – I did take photos to share a glimpse of the moments before and after his 13th surgery. Thankfully the ER and OR team weren’t bothered by me photographing my own child going through such trying moments. When he grows older I want him to be able to see just how brave and strong of a kid he has been.

I watched him in pain in the ER for a short time and prayed that maybe it was just a virus or even a UTI – but he clearly was having head pain and wasn’t very coherent majority of the time. I had no doubt his shunt was malfunctioning but I continued to pray I was wrong. Chance underwent a CT scan and x-ray to help us check on his shunt.

As we waited for his neurosurgeon he continued to watch TV and zone out – but there were brief moments that he’d give me smiles.

Shortly after this photo was taken the ER team came in to tell us the pressures in his head increased a bit and that his neurosurgeon would be in shortly and they anticipated he’d be going through surgery. We held him down as nurses attempted IV’s multiple times and so his neurosurgeon could tap his shunt to confirm if it was working. I was praying that maybe she could just change a setting but by tapping his shunt she was able to tell that it was no longer flowing properly. Just as we suspected, his shunt needed to be replaced.

As we arrived in the prep area for the OR Chance continued to zone out. We remained by his side as the nurses and anesthesiologist prepared him for surgery.

Although it’s been over 3 1/2 years since we’ve taken Chance into an emergency surgery – many of the nurses in the OR area remembered him well. We were greeted with the thoughts, “oh Chance we were praying this wasn’t you on our list for surgery.”

He still had moments where he would smile for us – there’s no doubt that he knows he is loved.

Even after 13 surgeries – it never gets easier knowing your child is going through a surgery. Even with all the faith we have in his doctors – it’s hard not to worry and fear the uncertainty of the days and week ahead as we remain hopeful that this shunt will do it’s job for a long time. We greeted him after surgery and he was awake but still very groggy.

He had a tough time keeping his eyes open – we stood back and admired our beautiful brave boy.

And from time to time he’d open his eyes and smile – clearly looking for the reassurance that we were still there beside him.

Once he was stable we took him to his room to recover.

Typically children who undergo a shunt malfunction recover well and go home a day after surgery. His doctor was hopeful to send him home the next day but wanted to watch him closely to see how his recovery went. The next morning he woke up still very tired from surgery.

But he was all smiles – partly because he could order pancakes for breakfast.

Most of the morning after breakfast he was tired and very quiet. One of the doctors came to visit him – he remembered Chance from when he was a baby and his shunt malfunction history. Now that Chance is a bit older it was awesome to see just how much he interacted with Chance to help get him to smile. The fart app sparked a fun humorous time for them both.

We’re so thankful for those who stopped by to check on Chance – though we have family and friends in Orlando it’s always the families affected by spina bifida who step up to show their love for our son. Though Chance had his own toys as well as toys and gifts brought from others – very little made him want to move or play less than a day after surgery.

He’d still smile from time to time but he seemed to not be feeling himself still.

More than once during the day Chance crashed and got some rest. He continued to complain of a headache periodically as well – I grew more nervous if this shunt was working. Perhaps it’s my fear of his first year – more than once we’ve had a shunt fail within a matter of a day or two. So we agreed with his neurosurgeon that we’d keep him another night and if he still complained of pain or wasn’t himself we’d order more tests.

By the evening Chance was happy to have our family visit him – his buddy Jaylen sat and played nintendo with him.

I had hoped he was doing better seeing all of the smiles with our family but then just before bed he fell asleep crying with another headache – a bit of tylenol helped him rest through the night.

He woke up happy that his big brother called to facetime with him, but still he seem to be feeling pain. He began to feel a bit better at times – but it was really tough to know if what we were seeing was recovery pain or his shunt beginning to have issues.

By midday we agreed that we would have Chance undergo another CT Scan. The test would help us see the pressures in his head better so that we would know if something was wrong or if we could be reassured to go home. Chance has always cried so hard through all of his MRI & CT tests – but this week was the first time ever a radiologist took the time to explain what he was going to go through and helped him feel calmer about the test. It was the first time he’s went through this test without crying.

Once we returned to his room one of the doctors returned to ask him if Chance would like to see his tests. I adore that Chance got to be a part of his medical care – he got to see the pictures of his head and brain and got to see that his test showed that his pressures looked improved. We suspect his headaches are from him getting use to the changes in pressure in his head.

He’s now went through 13 surgeries – 10 of which have been on his head. We’ve been keeping a close eye on his incision and keeping it clean and paused to take a picture today. Here’s his newest battle scar along with his huge smile to help reassure you all that he’s doing a lot better since surgery. He still has a few minor headaches but thankfully most of the day he’s doing great.

He’s so happy to be home with his big brother Jaylen.

The two have been total goofballs!

And yes, leave it to Super Chance to be a little rebellious and defy doctors orders. He’s back to bouncing around like we’re use to.

Thank you all for your prayers & support – we’re happy to have Chance home and doing well.

spina bifida

by Amanda Kern

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What happens when a doctor helps a family dream for their child with spina bifida

Monday, May 25, 2015

“Kind words can be short & easy to speak but their echoes are truly endless.” ~Mother Teresa

Since before Chance was born so many people have helped us find hope and have helped us dream of our son’s great future. No words can really explain how hard it is to accept the day you learn your child may be born with such significant challenges that his life may always require support and to learn of all the things that are considered “wrong”. Over the past four years I’ve learned that though this news is tough – it is an amazing reward to raise a child with spina bifida. Yet still today there are families being told to give up on their child’s life – in fact, in a recent survey I did in central Florida nearly 50% informed me that they were told by medical professionals their child’s life with spina bifida would be too hard to care for or that they wouldn’t have the quality of life worth caring for. The world doesn’t need more doctors telling us only everything that is wrong with our children – but instead ones that help us dream.

I’ve had so many request I share Chance’s story and pictures with our own doctors to make sure they know his life is so much more than the diagnosis. However, our doctors, were the ones who brought us so much hope from the moments we learned that he might be born with spina bifida our fears were calmed and we were reassured. We were connected with families who were affected by spina bifida and they’ve been a tremendous blessing ever since. In fact my own ob/gyn doctor is among the most influential of all of our friends & family who have helped me dream.

You see the past four years, since even before Chance was born I’ve been fearing so much and trying so hard to dream. But it’s hard. I have accepted reality – and I know that there is no cure for spina bifida. Chance is doing amazing right now but there are so many things in his life that will never go away and will always require care. In his first year he had went through so many medical moments and surgeries that I honestly was so frightened for what the years ahead would be like. I still recall being in the hospital as Chance had just went through is 6th, 7th and 8th surgery within a matter of three days and writing my doctor with my worries, not just for Chance – but for myself. After having Chance I didn’t have the easiest recovery and had continued abdominal pain that lead to me undergoing surgery when he was about six months old due to an infection that was lingering from the c-section surgery I had with him. At the time I was so much more concerned with just trying to keep his shunt working and tried not to think too far forward because I didn’t want to become emotionally overwhelmed by milestones he wasn’t meeting. In the moments before I was put under anesthesia for surgery I still recall feeling shaken and cold and just wishing it was over and looking up to my doctor who helped keep me calm in those moments and telling me to dream of great things – like my baby boy walking. “Dream of Chance walking on the beach,” she said. Some kids born with spina bifida do walk, but many do not – so since before he was born it was hard not to fear whether or not he’d ever walk. Never once did my doctor question if he would walk – instead she helped me dream that he would knowing surely dreams give us something to look forward to. It was a thought that has stuck in my head and has echoed in this head of mine for the past 3 1/2 years. Yes, as I’ve heard so many other families are told negative things about spina bifida by their doctors – mine helped me dream. Never once questioning his disability but instead reassuring me every step of the way.

Over the past four years as I’ve been on this journey photographing families affected by spina bifida I’ve dreamed of Chance on the beach with his friends – praying he is forever reminded that he (and we) are not alone on this journey. Two years ago I joined Chance’s friends, Grayson & Gabriel, on the beach to capture this moment. I recall feeling so driven to take a beach shot in 2013 and recall going to this session feeling a mix of uplifted and heartbroken, because as his friends were just beginning to walk independently, Chance could only take steps if he had a klunky walker that wasn’t meant for the beach. Instead his friends joined him sitting on the beach to capture this adorable moment because Chance couldn’t stand or walk without support. Gabriel & Grayson were the two babies we first met after Chance was born and no matter how many other spina bifida families we meet in the years ahead these two will always hold a special place in our heart.

Fast forward to this spring and Chance is getting stronger – it’s taken over a year of hard work with learning to use crutches and he finally has mastered the ability to take steps with them. We all agreed to meet up again at the beach with the hopes to capture this moment that has been in my head for 3 1/2 years. We took a series of shots, including this one:

Now that the kids are mobile – they were on the go the moment we said they could walk for photos. I admired my little guy – his friends are able to walk without devices and only one uses braces but walking on sand is really tough, even more so for a child born with spina bifida who has mobility challenges. Chance used those crutches to his advantage and took off ahead of his friends.

We captured so many precious moments, even the ones when they were racing and Chance’s legs gave out and he fell.

The echoes in my head that have left me dreaming of my son walking on the beach…are now reality and no longer just a dream. The past four years have seemed so long as I’ve waited for Chance to progress with his mobility – to be honest, wishing he would take off walking independently like his friends. At times it felt like these moments were never going to happen. But they did. Words really can’t adequately describe how happy my heart was to capture these moments.

Though Chance is now walking with crutches he will likely always need braces to help support his feet. Only time will tell just how stable his legs and feet will be. We’ve accepted the reality of spina bifida and that he may always need some assistance with walking and though it’s been hard to accept we are learning how to help him continue to live a great life and do all of the things any other child may experience.

If you are reading this and happen to have a child with spina bifida and are feeling discouraged about the milestones your child may not be reaching – I pray this brings you hope and helps you dream too. As hard as it is to accept when our kids don’t meet milestones or are experiencing delays – it’s so worth the wait because we’ve learned to appreciate these moments so much more once they do happen.

To my amazing doctor – thank you for always helping me dream and bringing me reassurance through so many of the challenging moments that have left me feeling weary since before our baby boy was ever born. I now dream for a world where there are more doctors like you – to give families the hope needed to realize they can dream of the great things their child can achieve despite living a life with spina bifida. 

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by Amanda Kern

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Awaiting Harper

Saturday, March 7, 2015

 

At the end of last year Aaron & Holly reached out to me with an interest in doing maternity and newborn photos. They are awaiting the arrival of their first baby, their daughter Harper. With less than two months left before her due date we met last weekend at Lake Louisa Park in Clermont. If you’ve never been there it’s one of my favorite spots in central Florida with tons of areas to explore. We captured some fun memories to help them hold onto memories from these moments when they were anxiously awaiting meeting their baby girl. Aaron & Holly I hope you both enjoy the photos. Best wishes to you both – I look forward to seeing you and Harper in April!

maternity, Photography

by Amanda Kern

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Constantin’s newborn moments

Sunday, March 1, 2015

Last fall I photographed the sweetest family for the first time for one of my fall mini sessions. At the time they shared the news that they were expecting a baby boy due in February and that they wanted me to capture his newborn moments. He was born a few days before Valentine’s day and we managed to meet when he was about 5 days old. They requested a few photos of him in an adorable little hat & tie outfit and his big sister picked out a special mickey mouse set for his newborn photos. She was excited for her little brother to wear the outfit – though he wasn’t nearly as thrilled with the idea. This newborn session was done at their home which allowed me to take several other lifestyle moments with the family as they showered baby Constantin with lots of love. Lena & Andre I hope your family enjoys the moments we captured – best wishes to you all!

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by Amanda Kern

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