Awareness can make a difference. Better, yet we can do something. We can make a difference. Just by talking and learning about congenital heart disease. We can work together to make sure all babies get screened, raise money for more research to save more little ones, and support the hundreds of thousands of children and adults living with CHD. Currently NO test can find every CHD in every infant. But, let's start somewhere. Let's screen every baby with a pulse oximetry test and keep working hard to find new tests and save lives.
When Alexandrea was born 7 weeks early, they listened to her heart, since also being in the NICU, she was constantly being monitered for everything from her blood pressure, her heart beats and breathes per min and even her oxygen levels. Never did they hear a hear murmur and even now at 15 months they are unable to detect one. Until now I had never really though about it, but may be all those times for no reason, her oxygen would all of the sudden dip into the 70's , and then a few min later be back on the high 90's .
No testing was ever done on her heart. Due to my little one being early,and then being diagnosed with possible nec, this is how we learned of Alexandreas ASD.
What is an asd ( atrial septal defect)?
An atrial septal defect is an opening in the atrial septum, or dividing wall between the two upper chambers of the heart known as the right and left atria. ASD is a congenital (present at birth) heart defect. As the fetus is growing, something occurs to affect heart development during the first 8 weeks of pregnancy, resulting in an ASD.
Normally, oxygen-poor (blue) blood returns to the right atrium from the body, travels to the right ventricle, then is pumped into the lungs where it receives oxygen. Oxygen-rich (red) blood returns to the left atrium from the lungs, passes into the left ventricle, and then is pumped out to the body through the aorta.
Arial septal defects occur in 4 percent to 10 percent of all children born with congenital heart disease. For unknown reasons, girls have atrial septal defects twice as often as boys.
to learn more you can go to http://www.lpch.org/diseasehealthinfo/healthlibrary/cardiac/asd.html
Due to Alexandrea's having possible NEC,s he was having daily x rays of her lower abd to watch for any change. During one of these xrays, the x ray tech messed up, He took on xray that went higher up. He took a xray that picture her heart. But this xay, showed something that they did not like. for her hear was slightly enlarged, now I was even more scared. My baby was lying in a isolette, and now may have a heart issue. Within an hour of this xray, they ordered a echo. Shortly there after , they told us that Alexandrea had a hole in her heart, That this would mostly close on hits own but may need to be surgically fixed.
Then due to her nec, they ended up flying her almost 300 miles from home to a higher level nicu and where there were specialists . Our home town nicu did not have any. By late evening they had ruled out nec, but again went back to her heart, they repeated the echo, the hole was a moderate sized . They said it should heal, but we will watch and wait.
When Alexandrea was a ablut 7 months, she had a repeat echo once again, This time the said it will most likely need help to close but we need her bigger, we would like her to be around 30-34 lbs, but wnat to fix before school age, the bigger the better. Well if you know us, This has also been a issue. Alexandrea weighs 14 lbs and some change
What are the symptoms of an atrial septal defect?
Many children have no symptoms and seem healthy. However, if the ASD is large, permitting a large amount of blood to pass through to the right side of the heart, the right atrium, right ventricle, and lungs will become overworked, and symptoms may be noted. The following are the most common symptoms of atrial septal defect. However, each child may experience symptoms differently. Symptoms may include:
child tires easily when playing
fatigue
sweating
rapid breathing
shortness of breath
poor growth
Ok for us, Alexandrea is classic, she pretty much has all the above, but yet the cardiologist says I do not feel her asd is related to her weight issues.
They look at me , how big were you. and just kinda brush me off. We did seek a second opnion, who said I belive some of the wight issues could be realted, but we need her bigger because of how they have to repair this.
surgical repair
Your child's ASD may be repaired surgically in the operating room, or by a cardiac catheterization procedure. The surgical repair is performed under general anesthesia. The defect may be closed with stitches or a special patch.
The cardiac catheterization procedure may also be an option for treatment. During the procedure, the child is sedated and a small, thin, flexible tube (catheter) is inserted into a blood vessel in the groin and guided to the inside of the heart. Once the catheter is in the heart, the cardiologist will pass a special device, called a septal occluder, into the open ASD preventing blood from flowing through it. This procedure is still very new. Consult your child's physician for more information.
we are hoping if they do have to repair this they can fix with the cardiac catherization as we rather her not to have open heart surgery. For the cath procdure the smaller they are, the harder it is for them to insert the cath .
Every baby needs to be screened. They have portable pulse ox, We used one after Alexandrea came home. If Alexandrea never hadd possible nec, she may have never been diagnosed.
Please go visit Cora's story, lets get the story out there.
Thank you for sharing sweet Alexandrea with us. I'm so glad she was diagnosed. And, thank you for spreading Cora's Story.
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