Hello there!

Hi! and thank you for visiting.

If this is your first time here, please visit the tabs above to learn more about Corbin and his story. Here is a good place to start: Corbin's Story.

If you found us through our Facebook page or from seeing the website on the back of my car, I would love it if you left a comment and let me know!


Thank you for helping support our cause and helping spread awareness. Please keep sharing our story!<3 p="">

CHD Week 2017 Twibbon

Want this twibbon?

Head here and add it to your facebook and twitter profiles now!

CHD Awareness Week: 2017!

I'm so excited for our FOURTH year hosting the CHD Awareness Week Photo-A-Day Challenge! 

Here is the new list:

It's super easy to follow along: simply post a picture to Facebook, Instagram, Pinterest, Twitter, etc that you feel relates to the word of the day.
It could be something that you took yourself, an old photo, or something you found online. Just remember to add the hashtag #CHDweek2017 so that I can see how many people participated this year.
You can add part of your story or just the photo; however much you feel comfortable sharing!

One month and counting!!

How to watermark your sensitive photos

In light of the bad people out there who steal other people's photos and use them in scams, hoaxes, fake profiles, or those sad, disturbed people who fake losing a child for the attention, I feel it is time again to share:

How to watermark your photos!

It is so easy!

A. Find an app/program

If you are using a PC desktop, a quick, free, and easy way is to download Picasa. 

If you have a mac, iphoto can do it too! Simply upload your photo of choice, add text, and save. **Link included to make this super easy!

If you are using your phone, there are dozens and dozens of apps that will let you add text to your photos. I use Photo Grid, there is Font Studio, Pic Lab, Text on Photo, Photo Editor..on and on and on. And they're free!
**I have included links to make it super easy! Please download one!

B. Add your watermark

So what you want to remember is to:

1. center the text

2. make is dark enough to read

3. make it big enough that it cannot be removed . This is SUPER important!!

EXAMPLE!

C. Save!

Save that photo and share away! 

D. Share this link!

You gotta share so that other parents can protect their images!

**PUBLIC SERVICE ANNOUNCEMENT:

This is NOT a guarantee that someone won't be a total douchenugget and take the time and effort to remove your watermark BUT I AM SAYING that this will prevent photo theft! If someone is out there looking for a photo of a sick baby to steal, they will most likely look over yours if it is watermarked. This is to protect your baby! 

Please do not share sensitive unwatermarked photos. EVER. 

CHD Week 2016!

It is that time of year again! MY time of the year! I love CHD week and I love seeing all the changing profiles from out new twibbon! 

I know what you came here for, the new CHD Awareness Week Photo A Day Challenge! Back for our third year, I'm so proud and happy that you all continue to share and take part and make CHD week a huge success!

As always, SHARE! Tag your friends and family, post this to your support pages, your Twitter, Pinterest, Scoop It, Instagram, etc. Just don't forget to use the hashtags so we can all so your post! #CHDWeek2016 and #1in100. 

Go forth and spread awareness advocates! 

*If you would like to see more #CHDWeek images that you can share, head to our page at The Corbin Story on facebook and check out a collection of images to share!

Update July 2015

Hi there! I hope you have found this blog because you are interested in learning more about pulse ox and heart defects, or maybe you saw my car with the website on the back and decided to check it out, either way: welcome. Please take a minute to read my son's story. Corbin was three months old when he passed away from heart defects but he has left an amazing legacy that continues to grow and blossom and inspire others to make a difference. It's all true and I hope you cherish it as much as I do.

I myself am currently enrolled back in college to study Diagnostic Sonography (ultrasounds and echos). I chose this field because of the passion Corbin's life has instilled in me for newborns and newborn health. I want to make a difference in someone's life and to be there for those parents who have to struggle through the "heart" journey that we found ourselves on 5 years ago.

I am not as active in social media as I used to be but that does not mean that my passion has left, it just means I have focused it in other places like college and taking care of my rainbow baby (baby after child loss) Charlie Jo. I continue to spread Corbin's story through the non profit I founded in 2013 called The Corbin Story Fund. The Fund raises awareness and education for heart defects and pulse ox as well as supporting a local child loss support group with the help of the NOAH Foundation, and we collect donations for the McDonald House in Morgantown to help families like us that have to stay there for an extended amount of time. We also honor Corbin's life through the Adopt a Highway program and clean up a local road a couple times a year.

If you were like to support this cause, please donate through paypal to: info@thecorbinstory.com

Meanwhile, I continue to volunteer with the Save Babies through Screening Foundation as a board member as well as participating with the NYMAC organization to help spread newborn screening awareness and education throughout the northern east coast.

Thank you for taking the time to check out Corbin's story and please feel free to share!

God bless.

Let's kickoff #CHDweek!

Hi there! I hope you have found this site because you are taking part in our second annual photo a day challenge!

If you have never done one before, don't worry, it's easy.

Each day has a corresponding word. You simply take a photo of anything that the word inspires you to think of. If you want to describe it literally or metaphorically, that's ok! You can write a poem, draw a picture, or even post a video. Whatever you like, just don't forget to use the hashtags #chdweek and #1in100 so that others can see your post and so that I can see your beautiful photos!

Here is the list. Feel free to share just do not alter or make your own in any way.

Have fun!

Here is my post for day one: Diagnosis

#chdweek Day 1: #Diagnosis. It was February 25th, 5 days after Corbin was born. We had just gotten out of an ultrasound appointment with a cardiologist whose exact words were "you need to take him to the ER or he is going to die." I ran from the room bawling, leaving my mom to gather up the baby. Luckily the ER was right across the street, although they ignored my heartbroken pleas to see him asap. They insisted on doing the stupid paperwork while I paced the room, praying he wouldn't die right there in the triage room.
Here he is being hooked up so they can check his heart. I had to leave when they tried over and over to get an IV in his tiny vein.
A complete stranger came up to me, said "you must be the mama, let us pray", grabbed my hand and starts praying for Corbin. I'll never forget her kindness.
That was the day we found out Corbin had life threatening #heartdefects.
(I watermark most photos of Corbin just in case) #chd #chdmom#heartmonth

CHD awareness week is a month away!

I'm SO excited to be able to host this for our second year! Last year's photo challenge was a great success and I hope to surpass that this year with an even bigger event!

CHD Week starts February 7th and runs till the 14th but the whole month is dedicated to spreading heart defect and heart disease awareness. It's all about spreading knowledge because knowledge can save a life!

If you have never participated in a photo challenge before, don't worry, it's easy!
Each day of the challenge has a work prompt. You are to take a photo or screenshot or draw a picture of something that the day's word makes you think of or inspires you to post.
Post the picture to your Facebook, Twitter, Instagram, Pinterest, or Google+ with a description of your post.
Don't forget to use the hashtags #CHDweek and #1in100 in your post so that they can be seen.
That's it!

**This is a Corbin Story original. Do not alter or make your own in any way. You are free to share and tag as much as you would like!**

First time parent

I seriously feel like a first time mom. It is the strangest feeling. Even though my son will be 5 (what?!) in two months, it's like he was here the whole time; like he's always been a part of our family and this is my first time having a newborn.

Weird I know, but I have a theory.

We had Monkey just over a year after we got married. We were, what I consider, still young and we hadn't been married very long. We were still getting to know each other, let alone trying to figure out how to raise this little human. As some of you know, I got pregnant with Corbin just three months after I had Monkey. So there was a lot going on!

All of that plus Corbin passing away changed us. We were not the same couple that had gotten married just two short years ago. That whole experience changed our faith, our emotions, the way we deal with each other, and the way we handle new experiences.

So Hubby and I were a new couple when Babygirl arrived. We were more sensitive, thankful, aware, humbled, and broken at the same time. You may not realize that EVERY SINGLE second of every day, we are thinking of Corbin. So having a newborn again and getting to watch her grow outside of the hospital is earth shattering to us. The simplest things break my heart; like the day we brought her home. Nothing happened.
"Well that's a good thing" you say.
YES!! It is!!
Nothing happened. There was no "well, we hear something wrong in her heart" or "we have scheduled you for an echo."
The very simple fact that we could take her home with no follow up doctor's appointment the next day was mind-blowing bliss.

The third day we had her home. Nothing happened.
There was no follow up echo to drive to. No heart breaking diagnosis of a heart problem.
Nothing happened.

Day five.
Yup. Nothing happened!!
We stayed home with our beautiful, healthy, amazing girl whose heart beats strong and even. Day 5 with Corbin, we were in the emergency room, waiting on an ambulance to take us 4 hours away so our newborn could have heart surgery.

Babygirl is a month old today and she has been here in this house longer then Corbin ever could. Every day, there is something she does that Corbin never got the chance to and there isn't a word to describe that feeling.

So yeah. I feel like a first time parent, getting to experience these amazing newborn moments and just feeling my heart almost explode with happiness and gratefulness.

Awareness post: Mesothelioma

On average, people diagnosed with Mesothelioma are given 10 months to live.

That’s 300 days.

300 days to make the most out of your time with your family. To see sites you’ve dreamed about and to experience things that have been gathering dust on your bucket list.

In honor of Mesothelioma Awareness Day, I’m sharing the story of Heather and her fight against this disease. In 2005, just months after giving birth to her daughter Lily at age 36, Heather was diagnosed with pleural mesothelioma (affecting the lung’s lining in the chest cavity). She is believed to been exposed to asbestos when she was a young child, almost 30 prior, when her father worked around asbestos.

She was given just 15 months to live.

She and her husband immediately went out to find the top specialist in mesothelioma cases, and soon they found Dr. Sugarbaker, a renowned surgeon in Boston’s Brigham and Women’s Hospital. Heather was put through a ring of tests to see if she qualified for surgery, and two days before Christmas in 2005, she underwent the intense surgery to remove the lining of her lung, her left lung, 6^th rib, half of her diaphragm and the lining of her heart. After recovering from surgery, a couple months later she started chemotherapy. After a few months of chemo, she then started radiation therapy and underwent an astounding 30 sessions and finished just under a year after her symptoms first appeared.

It has been 8 years since Heather’s diagnosis and she can happily say she is a survivor! She continues with checkups every 6 months, but thankfully has stayed cancer free! She has made it her mission to spread awareness and help others going through their own journey with mesothelioma.

You can watch more of her story here: http://www.mesothelioma.com/heather/

Mesothelioma is an aggressive cancer that attacks the lining of the body cavity called the mesothelium. The only known cause of mesothelioma is exposure to asbestos. The terrifying fact about asbestos is that “on average, 30 million pounds of asbestos are still being used in the United States today. The substance can still be found in many homes, schools, and commercial or industrial buildings. The EPA estimates that there are asbestos containing materials in most of the nation’s approximately 107,000 primary and secondary schools and 733,000 public and commercial buildings.”

Mesothelioma is hard to diagnose because the symptoms can be mistaken for something else, or are too subtle to accurately diagnosis at first. Symptoms can take from 10-40 years to appear after exposure; it is very important to talk to your doctor if you know/believe you have been exposed to asbestos and to see a specialist.

While there is no cure, treatments typically include surgery, chemotherapy and radiation therapy. Surgery options are to remove the tumor, or to remove the lung itself. Sadly, there is a high chance the tumor will reappear after removal since it is very hard to remove it entirely, without taking the lung, so usually surgery is accompanied by radiation therapy.

Asbestos is STILL NOT BANNED in the US!

Symptoms include:

·         Shortness of breathe, muscle weakness

·         Lower back pain, side chest pain

·         Coughing up blood

·         Weight loss, fever, fatigue, persistent cough

Facts:

·         Mesothelioma can sit dormant in the body for 20-50 years after exposure.

·         It is commonly diagnosed between the ages of 50 and 70.

·         You can be exposed second hand from a family member who works in an asbestos affected workplace.

·         Asbestos remains the number one cause of occupational cancer in the US.

·         NO amount of exposure to asbestos is save.

·        

If you live in a home built before the 70’s,

please have it checked for asbestos!!

http://www.mesothelioma.com/asbestos-exposure/removal/

If you would like to contribute your voice to this cause, please visit:

http://www.mesothelioma.com/heather/awareness/ to learn how.

Newborn screening month- raise hell

There are 11 days left in Newborn Screening Awareness month! Have you bought your shirt yet?

Where are all those people who said "If you need anything, just let me know" or "let me know anyway I can help!". Where are those people?

We really need your help to reach our goal of 100 shirts. This isn't a fundraiser just to raise money for the heck of it..this fundraiser will benefit one of the top newborn screening organizations in the country and help save lives! Your t-shirt purchase saves babies. What are you waiting for?

I've been in the advocacy world for almost 4 years now. It doesn't get easier. I always feel like a bit of a nag and annoying, but I DON'T CARE. 

If we are silent, who will speak up?

I could say I'm sorry for saying the same thing over and over...that I'm so sorry I've interrupted your casual facebook scrolling with the public service announcement, but there always needs to be that person who raises hell to change the world. 

So I'll ask again, what are you waiting for?

Visit www.booster.com/savebabies to help change the world.

Newborn Screening Month: Fact 3

Pulse oximetry screening is a type of newborn screening. It can help detect the number one birth defect in newborns: congenital heart defects, or CHDs. 

What is pulse ox?

Pulse oximetry is a painless, non-invasive screening that measures the amount of oxygen in the blood using a small sensor attached to a band. The band is wrapped around baby’s hand and foot, the sensor detects the percentage of oxygen in the blood, and the results are compared to see if there is a possible problem.

Why is this important?

Pulse ox screening is important to know about because it is not mandatory across the US yet. A lot of states have added it to their screening panel, others are working on it, and a few still have work to do on the issue. It is important for parents to ask about the pulse ox screening in every state!
Visit www.cchdscreeningmap.org to see where your state stands on pulse ox screening. 

Here is a great video that explains more:





More questions?

Visit www.pulseoxadvocacy.com

What is newborn screening?

Wondering what exactly is newborn screening?

Newborn screening is a state public health service, that varies by each state, requiring every newborn to be screened for various disorders and conditions via blood spot testing, a hearing screening, and (in most states now) pulse ox screening. This program is set up to help catch those life threatening conditions before they turn fatal. It's incredibly important to follow up with your child's doctor about the results as time is of the essence.

Click on the map to see what your state screens for!

Watch this video by Save Babies through Screening Foundation on newborn screening and why it is so important..

Visit www.savebabies.org to find out more, and please share!

Newborn Screening Awareness Month

 Feel free to download these photos and share them across your social media sites. Be sure to add #newbornscreening if you're into hashtags :)

September is Newborn Screening Awareness Month! It's a time for all parents to band together, no matter what their cause is, and advocate for one of the most important programs in the country: newborn screening. Thankfully pulse ox screening has been added to many state's newborn screening programs and we can rest a little easier knowing that heart kids across the county aren't going home un-diagnosed. 

So let's kick this month off with a bang and spread some awareness!!

We all know about Facebook and Twitter, but don't forget that Instagram, Pinterest, and Google+ are great social sites as well!

You can follow my posts at the following:

Facebook @The Corbin Story

Twitter @CorbinsHeart

Pinterest @CorbinsHeart

Instagram @CorbinsHeart

You can find more information and graphics to share at the Save Babies through Screening Foundation websites:

Facebook and Google+ @Save Babies Through Screening Foundation

Twitter @ScreenBabies

Save Babies is also having a fundraiser during the month of September to honor all the babies saved by newborn screening, as well as a way to help spread awareness. It's a wonderful way to help a great cause and get your friends and family involved! Check out the t-shirt fundraiser at: www.booster.com/savebabies, and don't forget to share!

More then a holiday

Father's Day has many reasons to different people. It's a day to thank you father for being there, being supportive, loving, and for teaching you those lessons that do not come easy for a parent.

For loss parents it has a whole new meaning.

A day to celebrate being a dad..but what if your child isn't with you anymore? It's a very painful reminder of what you have lost and what you will never be able to celebrate with that child anymore.
My husband deals with his grief in a totally different way then me but I know that he feels those same painful emotions on days like this.

That is part of why I wanted today to be the day we revealed the gender of our third child. Our rainbow baby. I didn't want to overshadow Corbin's memory, but instead to include him in our special occasion. It felt like our whole family was here to share the excitement and joy. I know he was there.

This day has been long awaited. Many, many heartfelt prayers have been said, tears have been shed, and our hearts have broken with each negative pregnancy test. We feared that maybe...we weren't able to have another child. That Monkey would be our child to hold, and Corbin our child to hold in memory. I cried with disbelief when I saw the positive pregnancy test, and I cried today when our child's gender was revealed. Not out of sadness or disappointment, but out of pure disbelief and awe that it was really happening.

It's a very conflicting feeling...to be so full of joy for this new life, but hesitant to celebrate too much based on the fear and knowledge of what could go wrong. We do not dwell on those fears, but we do not ignore them either. We cannot ignore the knowledge that we have gained from Corbin. It was a painful lesson, but one I will never forget or be regretful for.

We were joined by family and close friends for our celebration, and thankfully my brother and parents were able to watch through video chat.

There was pink and blue lemonade...

I was so thankful that my brother and parents were able to video chat in and see the whole thing!

Monkey was excited to see his uncle.

All guests voted and we also took an online vote to include our dear friends that couldn't attend. It was fun to see how many participated and who stuck around, waiting for the results! We also had everyone write down what they thought we should name the new baby. 

We represented Corbin with his footprint box and the little lamb that kept him company in the hospital.

After we voted on boy or girl and names, we went outside for the balloon reveal.

I was calm and relaxed till the moment I saw the box, then I had a little freak out moment before I was able to go outside and actually look. 

 Here I am trying not to hyperventilate! 

Me about to hyperventilate...

...then breaking down into uncontrollable sobbing. I had to look and concentrate really hard on the balloons because I literally did not believe my eyes that they were pink!!

Watching as some of them flew to the skies to play with Corbin

It took me awhile to calm down before I came back out for the last picture. 

We're having a girl!!

Happy Father's Day to my husband. I really do not tell him as much as I should how much I love and appreciate him. I never thought I would be blessed with three children and I am SO happy that we have built this life together. Thank you baby for our life, our beautiful babies, and for staying with me through the hardest time of our lives. You are THE best and most wonderful father. I love you forever and always. 

2008

2014

Happy birthday to me!

Yesterday was my birthday. I'm a grand old 27 years old!

(Que groans from those thinking.."That's not old!")

It was one of the best I had ever had, not because of the surprise balloons and cake at work, or the sweet letters in the mail, or the over-100 birthday wishes online...but because we have been keeping a secret...

I had a feeling, pretty much from the very beginning that I was pregnant, but where we have been trying for over a year, I didn't want to get my hopes up. 

When I took the first home test and it said positive...I didn't really believe it. I did, but I also would not have been surprised if it was a mistake. So I didn't get excited.

A week later when I got the medically official test from the health department, I still wasn't excited. I was happy! But still...not getting my hopes up because in my mind I was saying "what if there's nothing really in there?".

A week after that I had my first doctor's appointment, just to make sure. I found a wonderful new office in Beckley that made me feel right at home. The midwife was a dream come true...she listened as I told her all about Corbin, then promptly made notes to schedule a fetal echo to check the heart and all the screenings and genetic tests to put my mind at ease.

Then she tried to find the heartbeat...

She didn't find it at first, but when she tried a different approach..there it was...a clear as a bell and as strong as I was praying for! 

Heartbeat

We couldn't be happier!

We spent 3.5 hours making an announcement video only to have it rejected by youtube and facebook (boo) for a copyrighted song, but I love the video the way it is and I'm not changing the song, so as soon as I figure out how to share it...

CHD Awareness Year!

February 7-14th is Congenital Heart Defect Awareness Week. 

But it is also:

Have a Heart for A Chained Dog Week and
Risk Awareness Week.

Today is also Valentine's Day, which you knew, but did you know it is also:

Ferris Wheel Day
Organ Donor Day
Day of Action
Creme-filled Chocolates Day
Have-a-Heart Day
International Quirky Alone Day
Frederick Douglas Day
Pet Theft Awareness Day
Library Lovers Day
Race Relations Day
Condom Awareness Day
Women's Heart Day
Singles Awareness Day
World Marriage Day
League of Women Voters Day

Really? Now I know most of you have probably never heard of most of these days; I haven't, but that is a lot of competition!

That is why I am asking everyone to make EVERY month, EVERY week congenital heart defect awareness time. I'm not asking for a parade every week for CHD, but for us to take the ROAR we make during CHD week down to a RUMBLE that lasts all year!

I know CHD week is a huge time in the heart community, and I applaud the work each and every heart mom puts into this week. Whether you are simply sharing every CHD fact you see, or if you are out there going door to door with heart shaped cookies and a pamphlet; you are helping. 

CHD week has been a huge success this year and I'm so happy for that. I have seen a lot of sharing and reaching out to those who haven't heard of CHD before. The photo challenge through The Corbin Story was a great success and something I plan to continue for years to come. 

Let's keep it going! Keep your advocate voice at a consistent rumble and I just know CHD week will soon be a worldwide-known term.

Here is a recap of our CHD week photo challenge:

First post of #CHDweek! 

My #angel, Corbin Walker Caruthers. 

He was born with Williams Syndrome that caused many#heartdefects. 

After three heart surgeries, it was too much for his little heart and he passed May 17th, 2011. 

He is the passionbehind Corbin's Bill and why I do what I do every day.

#chdweek #day8 #red

Red is the color for #chd awareness but also my color for Corbin. 

This is a balloon release we had in DC while I was with Baby's First Test. 

One of my favorite shots.

#chdweek #day9 #Advocate:

to speak or write in favor of; 

support or urge by argument; recommend publicly. 

2. A person who speaks or writes in support or defense of a person, cause, etc.

3. A person who pleads for or in behalf of another. 

I am an advocate. I will forever be an advocate because of my son. 

You cannot sway my purpose or squash my passion. 

I will always advocate for newborns, for their health, their well being, and their safety. 

I do this to honor my son. To keep his legacy alive.

I will not stop. I will not be silenced. I do this #forcorbin.

#chdweek #day10 #Heart: 

Corbin's first heart surgery took 8 hours. 

I wasn't worried one bit, the entire 8 hours, until they called and 

said they were bringing him back to the PICU. THEN I got worried. 

That is also when we heard William's Syndrome for the first time. 

Two weeks later we had an official diagnosis.

This is what his room looked like right after surgery. There are 15 medicine dispensers. 

I was forewarned it would be overwhelming. My first thought was it looked like the deck of a spaceship. Thankfully he recovered very well from that surgery.#1in100 #thecorbinstory #forcorbin

#day11 #chdweek #Pulseox

The probe on baby Sally's foot is a pulse oximeter. 

After Corbin passed, I realized how vital pulse ox screening is. 

I wasted no time in starting Corbin's Bill with help from some wonderful heart moms 

(Hi Kathy and Michelle!). Pulse ox is a proven method for heart defect

screening and saving lives! Why would you deny a PAINLESS, 

two minute, bandaid-with-a-light on it, screening?!

#1in100 babies are born with a heart defect and pulse ox can detect them. Enough said.

#chdweek #day12 #Doctor/nurse 

This is Dr. Gus, Corbin's "baby heart doctor" as my dad likes to say. Even though he couldn't save Corbin, I have nothing but love and respect for him. He would always walk very quietly into the room, gently touch Corbin on the chest or hand, look at his numbers, then leave without a word. If you didn't have any questions, he would leave, but if you did, he would answer them very well and slowly so you could understand. The first time we met him, my husband was afraid he shook his hand too hard because "those are the hands that could save Corbin". A #nurse I want to mention is Christy. She became part of the family and I will NEVER forget the look on her face when we were told Corbin's heart had stopped. She was the one that always had a smile and a hug for us. I will always cherish the friendship and love she showed us those three months. These are my two favorite people from Ruby Memorial. #1in100#thecorbinstory

#chdweek #day13 #CHDfacts

Most have no known cause. Some are caused by random genetic disorders 

like Williams Syndrome or DiGeorge Syndrome.

Both are reasons to have your baby's heart checked at your 20 week

scan AND to ask about your#pulseox screen after birth. 

Did you know sometimes a CHD forms before you even know 

you are pregnant?? #education and#awareness is vital. CHD can

affect anyone- share and be aware of the most common birth defect. #1in100 #thecorbinstory

CHD Week begins!

Here we go! CDH Week starts today and I have created this photo challenge to help everyone spread awareness and connect us all at the same time. 

If you have never done a photo challenge before, don't worry, it's easy!

1.Simply follow each day's photo prompts by taking a photo of something that the word makes you think of.

2.Upload it to Facebook, Twitter, Instagram, Pinterest, Google+, etc...

3.Add the hash tags at the end of your post. This allows others to look up that hash tag and see what everyone has posted. Plus it helps me see how many people participated :)

4.Share!

I will add, if you plan on uploading pictures of your warrior/angel from when they had heart surgery, please, please, please do not forget a watermark! Especially if you know that photo will be shared. I explain why here. 

*This is a Corbin Story original creation. DO NOT alter or claim as your own. Thanks!*

Here is my first post:

My heart angel Corbin. He was born with Williams Syndrome that caused many #heartdefects. After three heart surgeries, it was too much for his little heart and he passed May 17th, 2011. He is the passion behind Corbin's Bill and why I do what I do every day. This is the first post of the #chdweek photo challenge!#1in100 #thecorbinstory #forcorbin

Hello new friend...

Hello new friend. 

Welcome to my world. 

I'm sorry to tell you, I'm sorry you had to find out this way...we were just introduced today after all, but..

my baby died.

 It was almost three years ago now. I know that was the last thing you were expecting when you added me online. I know you were expecting to see a lot of kid pictures, maybe some party photos, a couple albums of past vacations, and the occasional Facebook rant about something that made me mad.

What you were not expecting to see was posts about heart defects, how they take more lives then all childhood cancers combined, how I continually ask for shares to spread awareness of the condition that took my child. Yes...my baby died and yes, I can talk about it. 

You see, I am very proud of my son. Did you know that your newborn was screened for heart defects because of my son? Did you know that time they took your child for a couple minutes to "run a test" that they were putting a pulse ox band on her tiny, newborn hand and foot, to test her oxygen levels?To see how much oxygen her little, newborn heart was getting; to make sure there wasn't a life threatening heart condition that might possible take her life. Like it did my son. 

Pulse ox. It can detect heart defects and yes, it is mandatory in this state because of my son and the advocacy work, I and others, did after his passing to make sure that no other mother had to live through a surprise diagnosis of heart defects. 

Even though this is my story and my reality...I'm sorry. I'm sorry there is no easy way to tell a new friend something so deep and personal about myself. I'm sorry that we just met and you showed me pictures of your beautiful new baby girl, and now I'm telling you my newborn died. I'm sorry I have to put this kind of information on you, but please don't feel sorry for me. Please believe me when I tell you I'm ok. It's been a very hard three years, but there have been very happy moments. 

The moment when we heard Corbin's Bill had passed.

The moment I read the email that said the bill was implemented state wide.

The moment I watched a newborn, in person, be screened and pass.

The moment I was told I was going to fly to the White House to share my story.

The moment I founded The Corbin Story Fund and signed that paper making it official. 

The moment I joined another local organization to offer a child loss support group.

The many, many moments I have been told how much Corbin has inspired others to make a difference, to help spread awareness, to tell another mom to ask for pulse ox on her newborn...

And especially...

The moment I was told Corbin's Bill has saved other babies. Oh the tears...knowing that even though my son isn't here anymore, that he is continuing to save lives.

So you see...I am ok. Despite my loss, I have many things to be happy about.

So, it's nice to meet you. I hope you stay around. 

This is my story.

This is my life.

I am Corbin's mama. 

Corbin Walker Caruthers

February 20th, 2011- May 17th, 2011.

Corbin goes to New York!

Earlier this week I had the opportunity to fly to New York for a newborn screening meeting with an organization called NYMAC; New York Mid-Atlantic Consortium on Genetic Services and Newborn Screening.

Yeah. Long name! 

They had invited me to represent WV and to present my "expertise" on pulse ox, passing the bill, and my knowledge about social media and the power it has for advocates like myself. I was so excited to share my knowledge and talk to others who are as passionate about newborn screening as I am.

I had to drive almost two hours to the airport then head to DC, then up to Albany. Both flights were smooth and not too much turbulence. The hotel was 5 minutes from the airport, and they provide a shuttle, which I really appreciated. Taxi fare can get pricey! 

The hotel was very warm and inviting with what I can only call a old British feel. Very cozy.

After I got settled in and the rest of our group arrived, we set off for dinner at P.F. Changs. It was my first time to the restaurant and I told the other advocates that every time I travel, I feel like such a small town girl! We don't have this at home!

Dinner was delicious! Sadly, at this point, I lost the rest of the pictures I took with my camera so I can't show you the amazing food I had, or the trip home. :(

But I will tell you, if you ever have the chance, stop by that place, it is so worth it!

During dinner, I got to meet my fellow work group members and talk more about my story. The woman sitting next to me had lost her son 11 years ago to Trisomy 18, and then started an organization to raise awareness of the disorder and help other families. 

To chat with others about my passion really warms my soul. I can feel Corbin's spirit there as I am advocating for him and his cause. This is what I am meant to do. This is what I want to do for the rest of my life and nothing would make me happier then to be able to do that!

Our meeting started early the next morning and lasted till late afternoon. We covered a lot of ground, got stuck in a confusing conversation for a bit, but then made a lot of progress once we got over that hurdle. Since we were all asked there to help NYMAC reach their audience better, I presented my project for spreading their social media impact and to work on more awareness of the organization and education about what they do. I can tell there is a lot of work to be done, but I am excited and willing to help!

Some more amazing people you should know:

Hunter's Hope 

"Hunter’s Hope was established in 1997 by Jim Kelly and his wife Jill, after their infant son, Hunter (2/14/97—8/5/05) was diagnosed with Krabbe Leukodystrophy, an inherited fatal nervous system disease. "

Website: www.huntershope.org

Twitter: @HuntersHopeFDN

Facebook: https://www.facebook.com/HuntersHope

Trisomy 18 Foundation

"Our Mission is to encourage the search for treatments and preventions of Trisomy 18, to educate and support medical professionals, and to create a caring worldwide community for affected families."

Website: www.trisomy18.org

Twitter: trisomy18

Facebook: http://www.facebook.com/trisomy18