What does it mean?
Congenital. Heart. Defect.
A Congenital Heart Defect is a heart defect that is present at birth. There is no cure, only treatment through medications and surgeries. 1 in every 100 babies born has some type of congenital Heart Defect... ranging from mild arrhythmia and murmurs to major complicated defects requiring several tedious surgeries to enable the child's heart to somewhat function normally.
We have experienced our share of the complications and strain a CHD can put on a family.
Auriana Faith was born on September 17, 2008 after I spent several weeks in the hospital on monitors due to umbilical cord absent flow and pre-eclampsia. An ultrasound around 18 weeks revealed that Auriana had a severe heart defect known as AV Canal Defect and possibly a chromosome abnormality. When she was born 5 weeks early, Auri weighed just 3 lbs. 10 oz. We found that she had Down Syndrome and a heart defect within hours of her birth. She got her first echo-cardiogram at just 1 day old! We were told that Auriana had Complete AV Canal Defect-- No walls in her heart at all!! All her blood mixed up together. She was too weak to eat and had to be NG Tube fed. She had her first open heart surgery around 4 months old. In this surgery, the surgeon went into her heart to build the walls out of gortex patches. She did well and was in the hospital about 10 days. She never learned to eat properly though and was tube fed until she was 29 months old. We were told that Auriana may need another open heart surgery at 10-15 years old to replace the gortex. She was followed by a cardiologist every 6 months. In July of 2011, however, we noticed her tiring more easily and turning purple often. I called and made her a cardiologist appointment. When her cardiologist did an echo he noticed that she had narrowing in her aorta-- aortic stenosis. She has another open heart surgery-- subaortic membrane resectioning--in September of 2011, just before her 3rd birthday! They left some of the membrane intact thinking that it was better to leave some since the conduction system of the heart is located in this area. The surgeon explained that he didn't want to risk her needing a pacemaker placed and wanted to give her more time to grow. He said she would probably need another surgery in 3-5 years to open up the aorta some more. Just a few weeks ago Auriana begin having chest pains and after a cadiac cath was done, we were told that the narrowing in Auriana's aorta was measuring around 80 percent (which was higher than it was prior to her previous surgery just 15 months ago!) She also had developed narrowing all the way up into her left ventricular outflow tract (LVOTO- Left Ventricular outflow tract obstruction). She needed surgery, once again, within the month! We went into this surgery on January 25, 2013 with an extremely high probability of her needing a pacemaker and with an expectation for a 6-8 hour surgery. Just 4 hours after surgery began, it was completed and Auriana amazingly had her own heart rhythm!! We will be heading home tomorrow, January 28, just 3 days after surgery!! We are hoping not to need anymore surgeries until the gortex replacement around 10 to 15 years old. Auriana has been a little trooper though! She is so strong and has taught me to be thankful for the little things in life! Auriana has a 7 year old sister, Kylee, and a 1 year old sister, Lily Hope who have been a huge support to her during her surgery! We thank God daily for being with Auriana and allowing us the blessing of raising her, Kylee, and Lily!! My life would not be the same without my 3 little girls in it! God continues to bless us through Auriana on a daily basis!
Today marks 1 week exactly since her THIRD open heart surgery! Last week at this time I was sitting in a waiting room waiting on news from the surgeon. This morning I woke up to my precious Auri smiling and playing with toys in her bed! Her smile through all her pain says it all! She is just happy... always....she will be in pain but still says "I so happy" as she signs happy as if she's doing the 'chicken dance' and shows her adorable grin.
CHD has taught me to accept the things I can not change and to slow down and enjoy the precious time I have with my children.
I have met so many people through our journey with CHD who were not lucky enough to know before their child was born that their baby had a heart defect. I was lucky enough to know and to be prepared and have time to research doctors who could best help her. Most CHDs are visible on ultrasound. And most CHDs are detectable at birth with a non-invasive test called pulse-oximetry. The pulse oximetry test measures the amount of oxygen in the blood and only takes about a minute to read.
This month is all about hearts... valentines day is this month, and it is also CHD Awareness month. Remember and honor all those little warriors living with Congenital Heart Defects! Most of them have gone through so much more than any of us adults have ever endured and they do it all with a smile!
The hospital my daughter has her surgeries at gives the children Beads of Courage. They earn a different bead for each procedure, test, and surgery. This is Auriana with her necklace. You can see by the number of beads just how much she has gone through. These are all just from her hospital stays.
...i will be reading katie...and praying...i love you miss elaine/ccww nursery
ReplyDelete<3 Oh, wow! Thank you for sharing! Our 3 year old had his heart surgery at 4 months. As of now, they think it is likely that he will need another surgery later in his teen years. His Mitral valve is narrow, but they are hoping the increased blood flow will expand it as he grows. I can't imagine what you've been through. Auri is such an inspiration! <3
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