Friday's Featured Cause: Heart Defects - the story continues

I realized after the party that a lot more people are affected by heart defects and don't know where to turn.  Many comments wanted more information on statistics, support, and even little man's story. 

All the questions and concern inspired me to start a Friday feature program of my own.  On Friday's I will feature causes and the blogs that support them.  While many of the posts will be about heart defects (as it is so close to my heart) - I will also post about other causes/blogs that need to share the spotlight. 

If you are have a cause that needs shining on, Fill out my form! /short questionnaire and you will be featured.

Today I want to continue Little Man's story for all of you to read. 
We last left off with the introduction that changed my life.

After the doctor left, I called my husband.  I tried to be calm, but I needed him so badly.  I needed him to come back to us.  Unfortunately life doesn't work that way.  Life moves on, even when you want the world to stop.
The twins had to be picked up from school, I had to listen to a lactatian consultant. Things just kept happening.  Dear Hubby jumped on the internet as soon as he got to the house, waiting on the twins to get off the bus.  Yes, internet was against doctors orders, but we wanted all the information we could get.

My husband researched all he could before he came back to see me and Little Man.  Little Man was doing good, the hospital put off all regular procedures (immunization, etc) until the next day to avoid anymore trauma to him.  I continued to hold him for all life was worth.  He looked so big and healthy (9lb 4oz), I couldn't believe that deep inside there, something was wrong with his heart.  HIS HEART, the one do or die thing that we all need to survive.

As Dear Hubby and I watched our son, we decided not to tell anyone.  We wanted more information first.  We didn't want the looks and stares of others, we wanted him to be treated like a normal child.  As we left the hospital, I felt like we were going home to a whole new world.  As the twins we doting on their new brother, I was spending every waking moment on the computer - I had to know it all.

Some of the information was great, I learned more about the heart in the next few days than I ever wanted to know.  It is amazing how many parts of the heart there are, and how many defects are out there.  Did you know there are over 40 different types of heart defects?

Here is a picture of a regular healthy heart, and below it is how ebstein's anomaly changes the heart.

Image courtesy of tour2india4heath

I also learned that there are a lot of other conditions that can come with a heart defect.  Children can develop arrhythmias and their heart rate has to be checked often. 

I learned everything I could, researched every possible outcome and then made a page long list of questions for the pediatric cardiologist.  We would be going in for another echocardiogram within the week and I wanted to be prepared.  How do we know if is oxygen level is dropping? What is the difference between a regular colic child, and a problem with my son because his heart hurts? Would our son ever be able to play sports?  Would he have to have surgery?  How long before surgery?  What did we need to protect him from?  What would make him stronger?  How often should I check his heart rate?  How much is too much sleep? and the list went on.

We were very lucky with our son.  His heart defect was found by hearing a slight heart murmur.  Most heart defects are not found this way, many are not found until symptoms arise, and then it is too late.

Pulse Oximetry is a very simple, cheap, non-invasive way to screen for birth defects.  It has the chance to catch them up to 50% of the time. It could save lives - like Cora's. Yet most doctors/hospitals don't do it.

This is where you can help!!!

Parents across the country have starting petitioning their state governments to make pulse ox screening mandatory.  If you live in one of these states - please go sign their petitions, or write the representatives.  If you or someone you know is giving birth, make the request for pulse ox screening.  It could mean a world of difference!!!

Missouri Residents: Please help pass Chloe's Law

Nebraska Residents: Read this Bill and the write in support of it!

One of the other problems I found, was the difficulty in finding support about heart defects, luckily I've come a long way.  If you are a heart mom or want to know more about CHD's, please go check out this new site by a fellow heart mom.  http://www.spreadingchdawareness.com/

Somewhere...someplace...

Somewhere...someplace... today...

A family is waiting to hear...

Is something wrong with their baby?

The answers aren't quite clear...

This family has entered an unwanted world...

And they just don't know what to expect...

Somewhere...someplace... today

They first heard the words: heart defect.

And how they hoped this was not true...

And thought... this cannot be...

I too... know just how this feels...

For one day...this was me.

Somewhere...someplace...today...

A man and a woman embrace...

Their baby is in surgery...

They long to see her face...

They haven't got to hold her yet...

Without...a cord or line...

They pace the room awaiting news...

And hope she'll be just fine.

Prayers fill this busy waiting room...

And mom and dad are scared...

Somewhere...someplace..today...

The tiniest hearts are repaired.

Somewhere...someplace...today...

A child's growing fast...

Smiling,laughing,thriving...

His mom thinks...can this last?

It's almost easy...to forget...

That anything is wrong...

Somewhere...someplace..today...

Her child seems so strong.

Somewhere...someplace... today...

A little boy fights...

just to live A father holds his tiny hand...

His love...all he can give...

The doctor's are all baffled...

They fear that he might die...

Somewhere...someplace...today...

A family says goodbye... Somewhere...someplace...each year..

More than 40,000 families will see...

What it means...when something's wrong...

They'll face a CHD.

Today...for just a moment...

Stop...remember...reflect...

Make time to tell someone you know...

"I've been changed by a heart defect".

Author - Stephanie Husted

come back tomorrow to learn more about CHD

and to hear about a suprise that may be waiting for you

Seven Hearts in Seven Days: Announcement

The New Year has offically begun, and Februrary is around the corner.  Exactly one month from tomorrow, starts Congential Heart Defect Awareness Week!

As some of you know, Little Man was born with a heart defect.  You can read about the moment that changed my life here, but I don't talk about it too much.  You see, I am one of the lucky ones.  My son's condition got better, and has yet to require surgery or invasive procedures, but many Heart Moms are not so lucky.

Very soon after my son was diagnosed, I started trying to raise awareness for CHD.  I didn't want another Mom to be shocked like I was.  For all the warnings we get while we are trying to concieve or are pregnant, very few of us ever hear about the NUMBER ONE birth defect - heart defects!

"Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined" ~AHA

"At least nine of every 1,000 infants born a year have a heart defect. That’s almost one percent of live-born infants." ~AHA

This year I am doing a program called Seven Hearts in Seven Days.  During the week of Februrary 7-14, 2010 I am going to have other Heart Mom's guest post on my blog here.  For the grand finale on the 14th I will have a link up of all the blog posts raising awareness for Congential Heart Defects.

Please join me in raising awareness.  Grab the button on the side bar,  post your own stories of Seven Hearts in Seven Days during awareness week, write in memory of a heart angel,  or just join me for the finale and post facts on CHD.  Whatever you do, know that it will help another Mom!

If you want more information on CHD Awareness Week, check out CHIN!

how an introduction changed my life

There are moments in our lives that change us forever. Sometimes they are small, sometimes they are large. You may or may not know your world is changing, but however it happens we are changed.

Mama Kat (by way of Leslee) asked us to "Describe in 1000 words or less a time when something happened and you knew that life would never be the same."

My moment occurred by way of an introduction. I was laying in my hospital bed when a man walked in and introduced himself.

"Hello. My name is Dr. Ohlmstede, I am a pediatric cardiologist."

My first thoughts were along the lines of "oh, shit!"

I knew in that moment my world was changed forever.

I was alone at the hospital, the day after giving birth to our youngest son. My husband had gone out to get lunch, and I was enjoying a nap. The pediatrician on call had told me earlier in the day, that she heard a heart murmur on our son, but that it was probably the normal DA closing off and not to worry. Amazingly enough I didn't worry. Until I saw the "pediatric cardiologist."

"A pediatric cardiologist" are words no mother should ever have to hear.

I immediately knew something was really wrong with our son. I knew that this wasn't going to be good and I fought back tears and emotion so I could hear what he was saying. Amazingly, he was the gentlest doctor I'd ever met. He knew that he was delivering a crushing blow to me and he wanted to do it as gently as possible.

He sat down next to the bed and explained that after hearing the murmur, the pediatrician had ordered a echo-cardiogram to make sure it was nothing out of normal. The echo showed that my son indeed had a heart murmur, due to a heart defect called Ebstein's Anomaly.

At that point I started to crumble. I wanted my husband there to go through this moment with me, but I was all alone. I wanted to order the doctor out of our room, so that maybe I could wake up from this bad dream. Unfortunately, I can't make up words like Ebstein's Anomaly in my dreams, and I knew I had to concentrate on what the doctor was saying.

He went on to tell me that birth defects are really common, that they occur in 1 out of every 100 births, and that I didn't do anything wrong.

The waves of shock just kept coming. How could I not know about the possibility of a heart defect. I knew of down's syndrome, and spina bifida, but none of those occur even remotely as often as 1 out of 100. How come my ob never told me?

He kept talking, and I was trying to keep up. Thankfully he was patient with me.

He went on and explained that of all the heart defects, our son had one of the most rare. Ebstein's occurs 1 out of 30,000 and no one knows why.

I should really start playing the lottery.

He wanted to draw a picture of the heart and explain to me what was going on, but didn't have any paper. I gave him the back of my breastfeeding instructions. He explained that Ebstein's Anomaly occurs when the tricuspid valve doesn't close properly. This allows blood to leak back through the valve, and may cause the right atrium to be enlarged. In effect, not enough blood was getting oxygenized before going back into the body.

I wanted more details, I wanted a bigger picture. What did this mean? Would my son have to have heart surgery? Will he .......

Dr. Ohlmstede immediately started to calm the fears that came across my face. My son was not in immediate danger. We would have follow up appointments, and more tests run before anything was done. We would learn what to look for and how to take care of him. He also told me to be careful of what I read on the internet. That their pictures are usually worst case scenario and we didn't have the worst case.

Thank God.

He told me we would have an appointment to come into his office after we were discharged and he would do more tests and show us pictures of our son's heart.

I was grateful for this doctor and how calm he was.

He thanked me for letting him talk to me. He said he knew I would have more questions after I processed everything and that he would come back the next day and talk to my husband and I together. He would go through every question we had. And then he left.

And I crumbled. Life would never be the same.

Happy 2nd Birthday

It is hard to believe that Little Man is two years old today (we are ignoring the fact that the twins will be 7 soon).
Of course every parent says it is hard to believe that their child is __ age. But Little Man carries a special story with him. He is my miracle child. While carrying full-term for me is a miracle in and of itself, Bradley redefined the term.
After having a rough first trimester, Little Man started to calm down and grow, and grow and grow. Every time I went in for a checkup they would tell me how much more he had grown past his gestational age. He was a week big, 2 weeks big, 3 weeks big. My doctor even gave me a term for it (not that I remember what it was). I knew he was going to come early, he was big, strong, healthy and ready to see his family. Little Man's due date was June 6, 2007, but after having the twins at 36 weeks, an extra 6 weeks of pregnancy sounded too long for me. At 39 weeks I was ready to pop, they told me he was 8 lbs. 8 LBS!! I knew that if I waited full term I'd have an 11 lb baby like my brother was. I did not want an 11 lb baby. I started walking stairs at lunch, eating spicy food, basically doing every wives tale there was on how to jump start labor. Of course nothing happened. At 40 weeks, they told me he was 8 1/2 lbs and gave me the choice to induce labor.
"Where do I sign up?"
I was scheduled for 7:30am on Tuesday, May 29, 2007, the day after Memorial Day. Dear Hubby dropped the twins off at day care and my mother in law took me to the hospital. It was a great day - and relatively easy. I had an epidural and started pushing about 3 o'clock. I won't gross you out with all the gory details. I will say that when he finally arrived at quarter to 4 and the doctor lifted him up for me to see I was in shock. HE WAS HUGE. My frame of reference is a little skewed as the twins were only 5lbs each when born, but that was a big baby!!!
9 lbs 4 oz , blue eyes, blond hair, just like his brothers and just like his Daddy. He was perfect. Although he did cry for two hours straight, but only because he was hungry. After that he never fussed, slept great, and was the apple of his Daddy's eye.
Everyone who came to see us thought he was beautiful, so I am not being biast. The day after was going well until the pediatrician on staff came into my room. She said "your son has a heart murmur. We found it in a routine exam, and it may be nothing, but we want to run another test, an Echocardiogram, just to be sure." I had chosen the hospital we were in for health reasons. Because I knew from previous experience, they were thorough and my son would be in the best hands. I didn't even call John to tell him about the test, because she said it may be nothing.
Two hours later a pediatric cardiologist walked into my room and I knew the pediatrician had been wrong from the moment the cardiologist introduced himself. No one should ever have to meet a pediatric cardiologist. He told me that my son has a rare (1 in 20,000) congenital heart defect known as Ebstein's Anomaly. Our son's tricuspid valve is not closing properly, leaving an opening for blood to leak back through the valve and into the right atrium. As a result, the right atrium becomes enlarged and if severe enough, congestive heart failure can result. Luckily our son's condition was not that severe. The cardiologist told me his right atrium was enlarged and our son had constant backflow. The doctor was great, he drew pictures and sat with me for over an hour.
It didn't matter. I lost it anyway; I thought it was my fault. Then he told me, no one knows what causes this defect. He also told me that CHD is the most frequently occurring birth defect, and is the leading cause of birth-defect related deaths. I was shocked. How could I not know? Over the next few days my husband and I did a lot of research and what I found was startling, not just about my son, but about all children with CHDs. According to the American Heart Association about 40,000 babies are born each year with heart defects. And nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined.
The first few weeks of Little Man's life were tough.
We questioned everything. Would he have surgery? Would he be able to play sports? Would he get tired too easily?
We had to rearrange our world. We had to have and appointment with the pediatric cardiologist and got to watch the backflow on the echo. I had to switch insurance policies as quickly as possible to make sure Little Man would be covered no matter what happened. We learned what signs to watch for, how to take his heart rate. In July he had to go on a heart monitor for about a month because his heart rate was so high. It was hard, but I knew people were worse off than us. I knew that there were worse cases who were having to have surgery right then. We were lucky. We went back for our check ups at 3 months, 6 months, a year.
His first birthday was when we found our miracle. We went to the cardiologist for a echo to see how he was doing - and the defect was all but gone!!! The doctor said that he wouldn't even say he has a problem now and to come back in 2-3 years!!! Shocked, thrilled, releived, were only some of the emotions we were feeling. We had witnessed a miracle in our own son.
So today, we celebrate our miracle. I love you Little Man!

Making the decision to have a child - it's momentous. It is to decide forever to have your heart walking around outside your body. ~Elizabeth Stone