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“God gives his most difficult battles to his best warriors.” This child living with Spina Bifida is proof of that!

The doctors diagnosed Kenji at 18 weeks of gestation. For my husband and I it was very hard because we did not know anything about Spina Bifida. Many bad thoughts came to our heads about what Kenji’s life would be like. The doctors offered to abort but I said I was not going to stop the pregnancy, that I was going to have him as God intended and love him as he was.

I started to research Spina Bifida and I learned that having Spina Bifida does not limit you to anything you want to achieve. That every home where there is a person with Spina Bifida is blessed because God gives his more difficult battles to his best warriors.IMG_7726

Every time I went to a medical appointments in Boston at the Tufts Hospital they found something wrong with my Kenji. Every week they told me more bad news but I decided from the beginning to put it in the best hands, the hands of God. I believed with great faith that he would give me what he thought fit for me and my son. Well, he gave me more than I could have asked for!

When Kenji was born he was beautiful! He was immediately taken to intensive care. He was born at 2 in the afternoon of January 9, 2018, and at 7 o’clock the next morning he was being operated on for 9 hours. My little one fought! Surgery went very well.  We spent 10 days in Tufts. In those days I did not leave his side for a moment. Next, they had to operate on his head because he still had fluid on his brain. He was sent to the Children’s Hospital with Dr. Benjamin Warf. God is so big that when Kenji arrived for that surgery they decided not to operate because the fluid was decreasing. Instead, they kept him for observation for 3 days to repeat the study. When they did the study again it was better than the previous ones.IMG_7722

Today doctors are surprised with Kenji! His diagnosis was that he was not going to move, he would not even be able to recognize me. But, God is the one who has the last word! On July 13th of the same year the doctor told us that Kenji’s brain was developing normally and he was no longer at risk of hydrocephalus. Kenji is surprising because he is developing as if he was not born with Spina Bifida. Kenji is a very active, very intelligent baby at 6 months old. He already sits alone, plays and recognizes everyone and is very awake and happy. I know that God has a very big purpose with him and our lives since we were given this great miracle that is Kenji. I would not change the whole process that I had to go through in my life to have him. He had to get to me in this way. Before Kenji we lost two pregnancies and twins 5 years ago. God has been very merciful with me to give me one of his angels. He gave me more than I could’ve dreamed!

Thank you for allowing me to write you Kenji’s story. I hope it is not too long, although in fact it is 😊 Sorry but I had to tell everything about my miracle. Thanks😘

Original post:

 El es mi hijo Kenji , los médicos lo diagnosticaron a las 18 semanas de gestación , para mi y mi esposo fue algo muy duro porque no sabíamos que era realmente espina bífida nos llegaron muchos pensamientos malos a la cabeza de cómo sería la vida de Kenji , los medico no querían que el naciera pero yo dije que si iba a nacer que no iba a parar el embarazo que lo iba a tener como dios me lo diera y que lo iba amar como sea que el estuviera .Desde que me dieron la noticia de su condición me puse a investigar sobre espina bífida y vi niños bellos extraordinarios y aprendí que tener espina bífida no te limita a nada que quieras lograr , que cada hogar donde hay una persona con espina bífida es bendecido porque Dios le da las batallas más difíciles a sus mejores guerreros . Cada vez que iba a una cita médica en Boston en el hospital de tufts le encontraban algo malo a mi Kenji , todas las semanas me decían que tenía algo malo,Pero yo decidí desde el principio ponerlo en las mejores manos , las de Dios y creer con mucha fe de que el me daría lo que él creyera conveniente para mi y para mi hijo , y el me dio más de lo que le pude aver pedido. Cuando Kenji nació fue hermoso , de inmediato lo llevaron a cuidados intensivos el nació a las 2 de la tarde del 9 de enero del 2018 y ya a las 7 de la mañana del día siguiente lo estaban operando , duro 9 horas la cirugía , le pusieron mucha sangre pero mi chiquito lucho,Y salió muy bien de la cirugía , pasamos en tufts 10 días , en esos días no me fui ni un instante de su lado , luego el doctor nos dijo que tenían que operar su cabecita porque avía subido líquido y nos mandó al children’s hospital con el doctor Benjamin warf , pero Dios es tan grande que cuando el hizo la resonancia a Kenji decidió no operarlo porq el líquido estaba disminuyendo y lo dejo en observación por 3 días para repetir el estudio,Cuando lo hizo este estudio estaba mejor que los anteriores , al día de hoy los médicos están sorprendidos con Kenji porque su diagnóstico era que no iba ni a moverse, nisiquiera iba a poder reconocerme pero Dios es quien tiene la última palabra . El 13 de julio de este mismo año 2018 ya le hicieron la última resonancia de la cabeza a Kenji y el medico nos dijo que su cerebro se está desarrollando normal y q ya no tiene riesgo de hidrocefalia que Kenji es sorprendente porque se está desarrollando como si no hubiera nacido con espina bífida , Kenji es un bebe muy activo muy inteligente tiene 6 meses ,ya se sienta solo ,juega y reconoce a todos es muy despierto y feliz y se que Dios tiene un propósito muy grande con el y nuestras vidas ya que nos dio este gran milagro que es Kenji . Y no cambiaría todo el proceso que he tenido que pasar en mi vida para tenerlo a él ,porque el tenía que llegar a mi de esta manera , antes de el perdí dos embarazos el último era de gemelos hace ya 5 Años ,Dios ha sido muy misericordioso con migo al darme uno de sus ángeles y me dio más de lo que le pedí .

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People with Spina Bifida can do the same things that “normal” people can do. Mada is the perfect example!

Q: How old are you?

A: 15 years old

Q: What type of Spina Bifida do you have?

A: Meningocele

Q: How can we continue to follow your story?

A: on IG @madasteel1

 

My name is Mada and I have Spina Bifida. I try to live my life to the fullest!

When my mom found out I had Spina Bifida she decided to name me Mada. She wanted an Irish name that resembled the way I was going to live life. She knew I would have to fight to just be here.  Mada means powerful warrior in Gaelic. When I was born my parents didn’t know if I would be able to walk but I did when I was about 5.  I started to swim when I got to the age of 10 and I’ve even participated in the Paralympic events in Colorado.

I got to meet Michelle Obama! When I get older, I want to be an advocate for people with disabilities and I got to talk to her about that.  I even started Crossfit and it has been SO AWESOME!

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I just want to motivate people to do things that they can’t even imagine and show people ways that I have not only adapted to Crossfit but, to life! People with disabilities can do the same things that other “normal “ people can do, we may just do it a little differently.
I want people to know that they’re not alone and there are always people who are going through the same things they are.  I can’t express that enough!

 

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#Spinabifidawarrior

To say Mada is incredible is an understatement!  At the young age of 15 she is already on her way to being a very successful young lady.  I wish I was even half as brave as she was at that age.  I see greatness in her future and look forward to following her journey!  GO GET EM MADA!!

Diversability- No labels needed here!

Diversability

The act of having the ability to identify ones self in any way they see fit. The human race is very diverse.  So, no labels needed here.  Just  people living their lives to the best of their ability with no barriers, discriminations or stigma.

 

The other day I read a story in the news about a little girl in middle school who took her own life.  She was bullied so badly on the way to school everyday that it was too much for her to bare.  If that wasn’t sad enough I continued to read the comments that followed the article.  Everyone was so quick to point fingers and believe it or not they were bullying each other while arguing about why a little girl would do this after being bullied.  Insane right?

The point of this is not to try and figure out why a middle school child would take her own life but to talk about ways that we could be more accepting of others differences and arm the future with the ability to love each other a little better in hopes that things like this and other issues going on in the world could be avoided.


 

I can’t relate to the feelings of wanting to take my own life. However reading this little girls story had me thinking about how I felt as a child growing up. I can definitely relate to feeling different and isolated. My disability is invisible, making it hard for others to know what it is like to live with such challenges and relate. I often kept to myself or just immediate family about what I was going through because other “normal” children my age would never understand. These pics are just a couple of things I went through as a child that no one could see. I lived with bags under my clothes and scars all over my body.

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Some children were cruel, some adults were naive, and sometimes my community was inconsiderate. Thinking back to those days I reflect back on my own adulthood and am wondering if I’ve made others feel isolated or discriminated. Unfortunately, if I’m being honest, I’m sure I have.

I wish I could read peoples minds and know what they need from me. I want to say the perfect things so everyone knows they are valued…. unfortunately, I can’t read minds. So, what can I do to help this problem? What can I do to make everyone feel like there is no “normal” but just a bunch of differences that make us all wicked cool?

I’m going to be kind. YUP,  that’s it. I’m going to live my life more conscious of the fact that everyone is different and that there are invisible factors in peoples lives that make them perfectly imperfect.  We all do!  I’ll teach my children this same lesson and they will teach their children and then future will be bright!

I truly believe that if each of us could live a little more sensitive to the things we can’t see and also be more inclusive of others differences, then we could have a much happier tomorrow. It starts with just one person, YOU! KINDNESS MATTERS!

 

 

How this child with Spina Bifida is proving all his doctors wrong!

Q: How old is Nehem?

A: Nehem is 10 months old

Q:Where do you live?

A:  We live in Huntsville, AL

Q:What type of Spina Bifida does Nehem have?

A: Myelomeningocele

Q: How can we continue to follow Nehemiah’s story?

A: IG @hannahmcperry  or follow our blog www.shperryfamily.blogspot.com

 

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After 3.5 years of trying, and accepting that my husband and I wouldn’t conceive on our own, in December 2016 I found out I was pregnant. We were absolutely elated. We found out one Valentine’s Day that we were having a boy and couldn’t have been happier for Nehemiah Thomas to join our family.

Three weeks later at our routine Anatomy scan, everything changed. We were referred to a high risk OB where we were given the news that Nehem had Spina Bifida. Our world came crashing down on us and we were immediately told to abort because he would be incontinent, have severe learning disabilities and mobility issues. We decided abortion wasn’t an option and we would do whatever we needed to ensure that Nehem lived a full, happy life and that we would share his story and allow God to use him however He would like.

We were then referred to Vanderbilt children’s hospital where we were given much more information about what Spina Bifida really looked like. On July 27, 2017 Nehemiah Thomas was born and he has been blowing his parents and his doctors away ever since! He is now 10 months old, meeting all cognitive and physical milestones  (aside from weight bearing.)

 

The most common thing I see in each of the stories we share is that every single child seems to prove the doctors wrong!  They always live way beyond the expectations given to them and really teach everyone around them some valuable life lessons!

It just always amazes me and never gets old…..GO NEHEM!!!

This Spina Bifida Warrior is teaching others to see the beauty in what most people would label as imperfect.

Q: Where do you live?

A: Miami, FL

Q: How old is Elena?

A: She is 14  months old

Q: What type of Spina Bifida does Elena have?

A: Lipomyleomeningecele

Q: How can we continue to follow Elena’s story?

A: Follow her on IG @efernandes1215

 

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Elena was born at 41 weeks. My pregnancy with her had no complications, but at birth they did notice a skin tag on her lumbar region. Her second day of life, they took her for an ultrasound where we immediately knew something was found just by the look on the radiologist’s face. That moment, I knew Elena’s diagnosis involved a form of Spina Bifida- but I had no idea the details that came with this. Day 3 we spoke to a neurosurgeon who suspected Lipomyleomeningecele. After 6 months of waiting, Lipomyleomeningecele was confirmed. Lipomyleomeningecele is not your typical form of Spina Bifida. It is estimated that 1 in 10,000 live births will have this form, much less common than Myleomeningecele which is estimated 1 in 1,000 births. There is no connection to folic acid with Elena’s form, simply that some cells didn’t make it to where they should have gone in the first month of pregnancy. With Lipomyleomeningecele, the baby’s back is not open, rather fat has formed around the spinal cord and is holding the cord in place rather than free falling. Without corrective surgery, which has risks, the infant would most likely have lower limb motor movement damage and bladder and bowel damage.

We waited past our 6 months MRI for her predicted surgery date at 1 year old. I would be lying if I said that the wait was full of strength and courage. There were days where I felt like mom of the year, but there were also days where I struggled to keep my faith. There were days where I questioned “why us?”, but there were also days where I felt proud that God trusted us with this little warrior! I remember the day we found out, crying on the hospital floor, thinking that each hope and dream I had for Elena would never be possible. People, doctors, nurses tried to comfort me, but until someone could remove this diagnosis- I found no comfort.

But, boy was I wrong! As the months past, the comfort set in. This little girl went to more doctors appointments than probably most adults in a lifetime, but she did so with such joy, love and appreciation! Each day we fell more and more in love with her, and each day God’s miracles continued to flourish!

At 11 months Elena had surgery and God continued to protect her. He has not let us down once, and I am thankful for how we have grown through this experience, the people we have met, and mostly for our beautiful daughter who is a true miracle! What I’ve learned? I’ve learned to see the perfection in what most people would lable as imperfection. I’ve learned that God’s work comes in all forms. I’ve learned to see the beauty in people, even complete strangers through the Love they have for Elena and her story. And I’ve learned, through one hell of a year, that it will all be okay. The joy will outweigh the obstacles and the journey will be one of strength, love and growth! God is good!

 

I loved how Elena's mom says she has learned to see the 
perfection in what some people would call imperfection. Also, Shehas learned that it will all be OK!  Those are such powerful
words. I mean WOW! I think we could all learn from these simple 
things no matter what we are going through.  You have to take it one day at a time and know that it will all be OK, in fact it is perfect just the way it is!
We want to share Elena's story to provide more comfort to those 
parents that may feel like there is no hope.  Just wait......havefaith!

This Spina Bifida parent quickly learns to be the mother of all advocates.

 

Q: Where do you live?

A: Central Utah

Q: How old is Madilynn?

A: 13 days old

Q:What type of Spina Bifida does Madilynn have?

A : She has Myelomeningocele from L4-S1 and the sac ruptured at birth.

Where can we go to continue to follow Madilynn’s story?

A: Check out my blog thehomemadesister.com or on IG @Britneysteele1313

 

When we first found out Madilynn had Spina Bifida, the first thing we were told was that abortion is an option and a lot of people recommend it. I had a lot of people telling me that she wouldn’t have a good quality of life and that I was selfish for keeping her and giving her a chance at life. More than about 50% of babies diagnosed with SB are aborted. For Chad and I this route was not an option. We knew she was going to be a little fighter and we knew we could give her a great life. I have no regrets for choosing to keep her.

madilynHaving that be the first option we were given really shook me up. At the beginning of this journey I naively trusted that all our doctors would have Madilynn’s best interests at heart and be fully committed to giving her the best life possible. Don’t get me wrong, we have some amazing doctors who definitely know their stuff, but they were not and can’t be fully invested like we can. I didn’t realize it until later on when deciding our birth plan, no matter how great the doctors are, how many people love and support us, that it was up to Chad and I to advocate for this little person we created. I realized that no one would fight for her like we could, and that we needed to trust our instincts and decide what’s best for her.

I didn’t realize that we were the only ones who would fight for her best chances. We were the ones who would have to live with the outcome and we have the most invested into every decision being made this entire pregnancy.

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When we were talking about the birth plan with our specialist. We kept getting a lot of mixed answers on the safest way for her to enter this world. On top of the mixed answers from our doctors, the online SB community had me convinced c section was the best and safest way possible for her to be born. Our doctors were pushing for natural delivery, but they kept throwing my recovery into the mix of why they were choosing that route. I don’t care about what happens to me. I want to do what’s best for her. I can deal with what has to happen to me in the process.

After nine months, I know this is common sense for most, but I realized it is my responsibility to decide what is best for her until she can choose for herself. For all the special needs moms out there, trust your gut and go with your instinct. We know what’s best for our little ones. We know their situation, and we know our kids better than anyone else. As parents, we deal with the outcome so ultimately we need to decide what’s best for our kiddos.

I loved how Madilynn's Mom Brittney gives us a little insight 
into the day she found out her child was going to have some 
special needs. Unfortunately, the doctors tend to focus on the 
negative things. They have to...It's the way of medicine,
I guess.  How could they tell you all the good stuff? They've
never met your baby and certainly can't predict the future. They can't see the positive impact that child's life will have on you.But, I hope you are ready for the ride Britney, because 
Ms. Madilynn is going to be a rock star!

Britney talks about being the advocate for your baby! You learn
very quickly that you have to continue to advocate for your childfor the rest of their lives. You learn as your child's parents, 
you know what is best.

I Have to repeat what Britney said because I believe this is mostimportant! "trust your gut, and go with your instinct."

Spina Bifida is not a death sentence. It doesn’t have to define you!

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Q:Where do you live?

A: New Jersey

Q: How old is Riley?

A: She’s 10 months old

Q: What type of Spina Bifida does Riley have?

A:She has Myelomeningocele lesion L4-L5 and also Hydrocephalus that was caused by Spina Bifida.

Q: How can we continue to follow Riley’s story?

A: follow me on instagram @c.cameron3

What is your story?

Spina Bifida doesn’t define Riley. It doesn’t define our family. It made our family stronger.  When we heard those words “your child has a birth defect called Spina Bifida” and all the terrifying things that come along with it, we began to question ourselves as parents. We questioned our life with a baby with challenges, and we asked ourselves a million times WHY?

Let me tell you, Spina Bifida isn’t a death sentence. It’s a blessing in disguise. These babies are filled with so much joy, so much determination, and they consistently defeat the odds. Our little warriors taught us so much. How to truly love, how to stay positive, and how to never give up.  She has been through five surgeries but never seizes to smile and be the happy bundle of joy she is.  So remember that question we asked ourselves a million times….

“WHY” well because we needed this little warrior to change our lives for the better. She’s our hero! Spina Bifida may sound scary but all those scary feelings eventually become a memory and the joy and love for our angels last forever!IMG_7064

Riley's mom so perfectly explains what it is like to hear the news of having a child with 
disabilities. It is scary but it doesn't have to define your child or your families life. Even 
as I read her story I can't believe what she has gone through in her short life, all with this 
little rockstar attitude. You can feel her mom's passion for her baby in this story and it proves that the positives outweigh the negatives by a 
million. GO RILEY!!

We share Riley's story to hopefully help other 
parents realize that their little Spina Bifida 
Warrior does have a bright future!