What exactly is a CHD? And how does a healthy heart work?

Since I haven't explained yet what exactly a heart defect is, I want to do that before trying to explain Kiley's defects. Especially, since hers are rather rare.

Congenital Heart Defect (CHD)-
Congenital heart defects are abnormalities in the hearts structure. This happens because of incomplete or abnormal development of a fetus' heart ib the very early weeks of a pregnancy. *Approximately 1 in every 125 babies are born each year with a congenital heart defect, which can range from mild to severe. Congenital heart defects may involve a heart valve, a heart chamber, the septum, an artery or blood flow issues. The severity of the defect is how treatment is decided. There are some mild defects that don't require treatment. While others can be treated with medication, procedures or surgery.

To better understand CHD's its important to how a healthy heart works. Learning what all a heart does and how exactly the heart does its job really helped me completely understand Kiley's heart.

How A Healthy Heart Works-
The heart is a very strong, hard working, double pump made out of muscle tissue. Your heart is about the size of your fist. The heart is made up of 4 chambers, 4 valves  and has 2 sides.

Starting with the 4 chambers, the upper 2 are the Ateria and the lower 2 are called the ventricles. The chambers are seperated by a wall of tissue called a septum. Blood is pumped through the heart by the 4 valves. The valves open and close allowing blood to only flow in one direction.

The 4 valves are called the Tricupsid valve, the Pulmonary valve, the Mirtal valve and the Aortic valve. Each valve have "flaps" (also known as leaflets or cusps) The Mitral valve normally has 2 flaps, while the rest have 3. The flaps help to keep the blood flowing in the right direction, and prevents back flow.

Now the 2 sides of the heart. The heart has 2 pumps or sides. These are called the Left Heart and the Right Heart. The Right Heart receives blood that has just come from your body after delivering nutrients and oxygen to the body tissue. It pumps the blood to the lungs. Here the blood gets rid of a waste gas (carbon dioxide) and picks up a fresh supply of oxygen . The the Left Heart receives this restored blood from the lungs and pumps it through the Aorta, where smaller arteries distributes the oxygen-rich blood to all parts of your body.

The picture I attached shows a healthy heart and a heart with a defect. I hope this information has been helpful.

CHD Facts and Figures

CHD Facts and Figures | HeartBabyHome

CHD Awareness Poem

Your help is needed
and that's not all.
We need awareness
for the little and small

We need your help
to spread the word...
of congenital heart defects
for little have heard!

This is a deadly defect,
affecting many that are born,
turning lives upside down...

Congenital heart defects,
known as CHD's
are the #1 birth defect,
but a hidden disease

Doses of medicine,
many times a day
for a little child,
that can't run or play
her little heart,
can't take the stress,
her little body
just needs to rest

A little baby
that struggles to eat,
with tiny blue lips
and hands and feet
A mother stands by
her baby's grave,
praying through research
others will be saved!

Written by- Angela Brooks

The life of a heart mom- poem

BabyCenter

CHD Awareness Week: February 7th-14th 2013

Today begins the week of Congenital Heart Defect Awareness week. This is an international coalition of so many families, individuals, non-profit organizations, support groups and health care professionals that come together to participate in a campaign. A campaign with the goal of spreading awareness of Congenital Heart Defects/ Childhood Heart Disease (CHD). This week is so important, to everyone and here is why....

This week is dedicated to spreading the word and educating the public about CHD. By sharing the facts and our stories, we are helping another family that has been affected by CHD. There is very little awareness, which I personally find shocking, since congenital heart defects are considered to be the most common birth defect and is the leading cause of birth defect related deaths worldwide. CHD affects approximately 1.8 million the United States. We are 1 in every 100 babies, that is 40,000 babies a year, and sadly about 4,000 of these precious babies wont mske it to their first birthday. CHD claims twice as many lives a year as all types of childhood cancers combined. It comes in 30 forms and there is not a single cure to any of them. And although I have a gorgeous little girl with multiple defects, I am one of the many heart parents who had no idea what a CHD even was until it affected my family.

Just as in Kiley's situation, there are many babies who are sent home from the hospital UNDIAGNOSED! Even with all Kiley has been through and still has so much more to go, I have to say we are one of the luckiy families, she is still her with us. If this were to happen to you, or family member or friend would you know the signs and symptoms? Please help us, all the heart babies, adults and families out there and spread the word!

Congenital Heart Defect Informational Links

Congenital Heart Defects- www.congenitalheartdefects.com

Congenital Heart Defect Information Network
http://tchin.org

The day my life changed forever

This is the story of the day my life would be changed forever. The day the whole world stood still. It all started like any other normal October morning. Got the older kids up, dressed and ready for their school day. Once they were off to school, we got the girls ready for their six month well baby check up. The worst thing that even crossed my mind could possibly come out of this appointment would be the two crabby babies we were going to be dealing with after their shots. I so wish it would have been that simple. During their appointment, the doctor was taking some extra time listening to Kiley. He then told us he could hear a "slight murmur". This in itself terrified me, I have 5 children. All healthy, I personally had never been anywhere near a cardiology office. Im guessing that the doctor noticed my instant worry and fear. So trying to reassure us, he says "don't worry, if it were anything major they would have caught it at birth".

About a week later on October 12th we arrived at our appointment. Like I mentioned before I had never seen or been in a cardiology office, let alone a pediatric cardiology office. I was a nervous wreck, just from the thought of something possibly being wrong with my baby. I just kept telling myself that everything was fine. There was no way Kiley could have heart problems. We don't have any family history of any heart problems like this.

After what felt like forever, we were called back to see the doctor. Chris and my mom both came for this appointment. First we talked with him for a while about Kiley's health, growth and how we felt she has been doing since she was born. And again, now that I know, I can see all of the issues she was having and all the signs that pointed toward heart problems. Kiley had an electrocardiogram (EKG), an echocardiogram (ECHO), chest X-RAYS and blood work done. After all this, we were given yet another referral. After all the testing was done the doctor came in and told us that he was sending us to C.S. Motts Children's Hospital in Ann Arbor for further testing. He didn't give us a diagnosis, he wanted Kiley looked at by the amazing cardiologist that Mott's hospital has. He said that they would be contacting us within two weeks and if they hadn't called by then to call him back. He did start Kiley on Lasix that day. That is a diurectic or in other words a "water pill". She still takes this twice a day.

Well, needless to say we definitely didn't wait two weeks for an appointment at Mott's. We no sooner pulled into our driveway when the phone rang. They wanted us there the next day at 7 in the morning. Plus they had Kiley scheduled for a procedure the following day, a cardiac cathereterization.

So just a few short hours later, around 3am we packed up Kiley and headed out to Ann Arbor. I can still remember arriving at the hospital, my hands shaking and completely terrified. We meet the doctors that were going to be performing the tests on Kiley. First, we took her for a chest x-ray, then for an EKG, followed by an echo. Exactly the same as the day before. Kiley was sedated for this echo though, so they could get a good look at her heart. After her echo we went back to the room we started in and waited for the doctor, so we could get the results.

I can't remember how long it took for that doctor to come and talk to us. It felt like forever and yet just minutes at the same time. As he walked in I seen the look on his face and my heart sank. He started by telling us that we didn't have to stay in Ann Arbor for the procedure that was scheduled for the next day. It wasn't going to be necessary to do it. And then, in a split second my whole world crashed, the world stood still. I had been holding Kiley, she was coming out of the sedation, so when he said the words "she needs open heart surgery and soon" I can still feel how my legs got weak and it was taking everything I had not to just fall. We just didn't understand. How did my beautiful baby girl go from perfectly healthy to needing life saving open heart surgery? Why? What caused this? Did I do something wrong while I was pregnant? Why her? She didn't deserve this. The doctor had been under the impression that we knew she had some form of a heart problem. Once he realized we didn't, he apologized a million times and tried explaining it all again, but in more detail and explaining exactly what was wrong and why she needed the surgery. I can recall every single, tiny detail that lead up to this moment. Right down to the outfit both Kiley and I were wearing and each magazine that laid on the table in that room. But I can not tell you what exactly that doctor was saying. I was shocked, devastated and especially down right terrified for my daughter. After a while, once my mind stopped spinning, well  little bit, the doctors and nurses went over each of the congenital heart defects Kiley was born with, what each one meant and explained how her heart was suppose to be working compared to how it was.

I walked into that hospital that day, with a "perfectly healthy baby" and left with a list of 10 diagnoses, of both Congenital Heart Defects and other conditions. I will explain each of those later. I tried to be strong, I knew I had to be, for Kiley. I just kept hoping I would wake up, that this wasn't happening. Now, to tell everyone... harder than it sounds.

Kiley and Chloe's Arrival

Kiley and her indentical twin sister Chloe were born on March 25th, 2011. I was 37 weeks along and was going in for an ultrasound and a non stress test. For about three weeks I had been getting ultrasounds to track the girls growth rates. My doctor told us that since I was getting close to the end of my pregnancy and the fact that I personally am not a very big person that there was a chance that I stop producing the adequate amount of blood needed for both babies. So we started doing weekly ultrasounds. Well, at this one Kiley had not shown any form of growth at all. They always sent me up to the birthing floor the NST right after the ultrasound. So during this NST, my doctor comes in tells me that the best thing to do was to take the babies. I was 37 weeks along and ready to have these babies! So, my husband made a few phones calls and we got ready for an emergency c-section. And less than hour later our beautiful girls were here. Kiley was born at 9:00pm weighing only 3 pounds 14 ounces and was 16.5 inches long. Chloe followed two minutes later at 9:02pm weighing 5 pounds 6 ounces and 18 inches long and both just absolutely gorgeous.

This day or anytime soon would we find out about Kiley's heart defects. We did spend 8 days in the hospital though. The girls were born on a Friday night, the doctor released Chloe the following Wednesday. We didn't separate them the hospital let us all stay until Saturday when Kiley got released. A few weeks before the girls were born we moved about an hour away. I liked my OB, he had been the only doctor I seen during my pregnancy and knew that when it came time Chloe was breech so our plan was for me get a c-section. So we decided we drive that hour for my last few visits. Other than the toll it took on our gas tank, the hardest part of being at the hospital for a week was that we had three more kids at home. Yes, we have 5 kids.

The reason we were told Kiley couldn't be discharged the same day as Chloe was because she wasn't eating the amount per feeding the doctor wanted her to. Which was only an ounce every four hours. At that I knew nothing about heart defects since neither one of us have any family medical history of any heart related issues. I see the poor feeding problems now as I look back on it, but then I thought nothing of it. Finally when she ate so that ounce for so many feedings Kiley was released and we got to go home. We left that day, in the doctors words "two perfectly healthy baby girls, they are just a little small".