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My Son's Defect (Please read and educate yourself or others)
- Jan 23, 2009 at 6:48 AM
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- Comments (47) Total Views (2779) Everyone can see this journal post.
In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
Do you know what CHD is? I mean REALLY know what it is? I mean you see the abbreviation and you say "Yea Congenital Heart Disease, I know what that is" But do you know anything about it?
Do you know that it is the #1 birth defect? Did you know that every year over 25,000 babies in the United States alone are born with some type of Congenital Heart Defect?
Worse than that did you know that there is NO CURE for CHD?
Thats right NO CURE, just ways to treat them.
1 out of every 115-150 children born will have some type of CHD, from minor to major.
Did you know that most defects will have formed before you even know you are pregnant?
My son was born with Tetralogy of Fallot with Pulmonary Atresia. Do you know what that is? Would you be able to spot the signs or symptoms of it in your child?
I was lucky. We found out AJ was/is sick before he was even born. But I had to do anything short of pulling teeth to find out.
My mom was born with a heart defect. Did you know that heart defects can be genetic?
I asked my OB/GYN to give me a fetal echo, just to rule out any issues in my unborn child. After much convincing they gave in. The day of the echo the tech briefly took a look at the screen and said "This is a normal echo... Ill have the dr come in to confirm" The dr came in and said to me straight off the bat "What are you doing here? You are 20 years old, you are healthy, This is a waste of my time"
Imagine his surprise when he put the ultrasound wand on my stomach and noticed no blood flow through the pulmonary artery.
I can go on and on about the details of the following weeks, but I will make it brief and just say that a pediatric cardiologist confirmed my worst fear. Our child did in fact have a defect, multiple defects at that. My OB tried to convice me to abort. I refused.
I was induced at 39 weeks. AJ was born when I was 39 weeks and 2 days. It was a Friday. He was immediately intubated. He had his first surgery that Monday morning. He was 3 days old.
AJ is now 4. Next month he will be having his 4th surgery. On Monday he is having his 3rd cardiac cath.
He is beautiful and loving and STRONG. Most people have no idea that anything is "wrong" with him. And when I tell most people that he has "Tetralogy of Fallot With Pulmonary Atresia" they say "Whats that?"
It would mean so much to me to see this being posted as popular. So that people can become aware. This is REAL and scary, and moms should KNOW. Thank you for reading
WOW!! I just came home from my sons Pre-admission testing for his cardiac cath on Monday and I am just floored to see this post voted #1 most popular. My prayers are with you fellow heart moms/grandmas/aunts/sisters etc. Thank you everybody.. youve given me my first "good" cry in a long time
Comments:
What a great post. I was born 30 years ago(YIKES!) with a heart defect.To date I have had 5 open heart surgeries and see a cardiologist every 3 months. I hope your little boy continues to do well.
Thank you for educating us! Most of us probably had no idea. I am so glad your boy is doing well. I will keep praying for him and his upcoming surgeries.
I have CHD! my son also has the heart defct we both have TETRAOLGY OF FALLOT!! and one fator that we also have that came with our heart defect is DiGeorge syndorme. I have journals post about our defects!!
I just had my 2nd ohs back in 12-7-07 to replace my pulmonary vavle. we see our cardiologist every year!! TJ has had the BT-shunt and the full repair at nine months of age. so far no more surgeries.
prayers and blessings, chicka:)
thank you so much for posting this and helping educate. I had no idea that it could be detected before birth and really what it is. I am glad to hear your son is doing good and strong
As a mother of a child with a heart defect, I appreciate your initiative to educate everyone. My DD was diagnosed with Atrial-ventrical septal decect at the age of 5 months. She had open heart surgery at 6 months. It was a scary time for us, too. Luckily, we found a great set of doctors who took the time to educate us, and help us through. Except for the large scar on her chest, no one would ever know anything is wrong with her now (she'll be 4 in March)!
I will keep you in my prayers!
This really hits close to home for us. I am currently sitting beside my son's isolette in the hospital. He is 3 weeks old today, and we've been here since night before last. He has a medium to large hole in his heart that pushes a lot of extra blood into his lungs and makes everything he does a LOT of work. He is very tired most of the time, but already he has such a great personality. He is the sweetest baby, and his older sisters and brother have been thrilled with him ever since I brought him home. It has been HARD on me and especially my DH since he was diagnosed, and when he started declining faster than his cardiologist thought he would, I was devastated. I still held onto that small hope that the hole would close on its own and he wouldn't need open heart surgery. At this point, we're just making it day to day, trying to keep our heads above water with his meds, but we can see they are starting to fail as well. So soon, we will be sitting down at Children's at Egelston, waiting for him. Thanks for posting this so that more people can be aware.
my heart goes out to you and all the mommies/parents who go thru this. my big boy 6 , he was born also w/ chd --his tiny hole is actually healing up, as of last yr. on the sono the dr said he can now see tissue forming and to me it is a miracle.It was not affecting the blood flow. I am so thankful!! It was a tough time, finding out, so My thoughts and prayers to all affected of this, I have an updated post on my page, Its is one of the Miracle's in my life. So glad your son is doing good!!!
You sound like you followed your Mama instincts big time. Your little man is lucky to have such a great advocate.
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Thanks for posting this. I go in next friday for a fetal echo because there might be something wrong with this baby's heart. It's good to know that even if something is wrong, it could be fixed, at least somewhat :) There is hope anyway :)
- Xynyth
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