CHD Awareness Week 2010!!! Our journey with CHD!!

[Mom2kyky]

It was in the summer of 2008 that we first learned what CHD even means.... we were at a routine ultrasound appointment with my second pregnancy. Our other daughter, Kylee, was at her Grandma's house, and my husband and I were excited to be finding out the gender of our baby that day! The ultrasound tech told us that I was pregnant with another girl. I remember saying "oh... Kylee is going to love having a little sister!". Then the ultrasound tech stopped what she was doing and said she needed the doctor to look at something she had seen. We sat there what felt like forever waiting for that doctor to come in. She came in and reviewed the ultrasound images, and then took us in a little room off to the side. She seemed so cold and emotionless as she said to us "the fetus seems to have a serious heart defect, known as AV Canal Defect. It will most definitely need at least one major heart surgery if it survives birth. Not only that, but we believe it also has a chromosome abnormality... probably Trisomy 18." She went on with her stern emotionless words to say, "this baby is most likely not viable with life. We suggest you have an amnio done to confirm so that you aren't put through an un-necessary c-section should the baby go into distress." I remember thinking the whole time she was speaking, "how can this lady even think to talk about my child like this? fetus. it. not viable with life. un-necessary?" I immediately told that doctor that I in fact would not be having an amnio because regardless what it showed, this was my child and I would be continuing my pregnancy and I would pray and have faith that God would take care of her! 
That is exactly what I did... I prayed all day, every day for the rest of my pregnancy... that my baby would live! Every time I went to the doctor, they kept bringing up this Trisomy thing and each time I would ask why they didn't focus more on the heart defect that is fact, rather than the Trisomy that is suspected. They never had an answer, and continued to try to talk me into terminating my pregnancy. Finally, at 30 weeks, the baby stopped growing and showed distress. I was hospitalized and on constant fetal monitoring. We lived in the hospital for 5 weeks until she actually started losing weight and was delivered 5 weeks early. The delivery doctor was actually ordered not to do a c-section even if she was in distress, so I kept my eye on the fetal heart rate monitor and as soon as her heart rate began to fall I demanded a c-section... she was born 11 minutes later (she had little to no heart beat while they prepped me quickly for the c-section), but we knew she was a fighter from the beginning as she kicked the doctor's hand on her way out! She was 3 lbs. 10 oz.!! We named he Auriana Faith!! An hour later, the NICU doctor came in to tell me that it was confirmed she had a CHD, Congenital Heart Defect, known as Complete Atrio-Ventricular Canal Defect... she had some type of hole or defect in EVERY wall within her heart, and all of her oxygenated blood was mixing up with her de-oxygenated blood. She also has Down Syndrome, which is answer to my prayers because that meant to me that she would live! 
We took her home weighing around 5 pounds and on a feeding tube. She was put on several medications to help her heart to function as she continued to grow and she had her heart repaired on February 23, 2009. She was 5 months old and weighed around 11 pounds at the time of her open heart surgery. She was in the hospital for 7 days and recovered very nicely for the most part. Now, almost a year later, she has been cleared from having to go to the cardiologist for a whole year! We will see the cardiologist probably yearly for the rest of her life and pray that no other problems arise, although several cardiologists and heart surgeons have told us that her AV Canal repair is one of the best results they have seen! Auriana does still have some other medical conditions related to her premature birth and having Down Syndrome. She is still tube fed, has a hearing impairment, and a problem with her ankles, but she has been covered with the prayers of many from before she was even born, and I have to give God credit for all Auriana's progress and have faith that he will see her through all that she needs to reach her full potential just as he has allowed her to live!! We have been so blessed to have both our daughters!!

Auriana has been blessed to have had wonderful results from her open heart repair, although we do have to keep an eye on it because a congenital heart defect is never turely "fixed", and never will her heart work like a "normal" heart! Many children with CHD's have more complex and severe heart defects than Auriana's, and require numerous heart surgeries, pacemakers, and even heart transplants. 

CHD Facts
Congenital Heart Defects are the #1 birth defect. Source: March of Dimes
Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes
About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation
Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation
The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD. Source: Children’s Heart Foundation
This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation
Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation
Though research is ongoing, at least 35 defects have now been identified.
4-8% born with CHD have Hypoplastic Left Heart Syndrome
4-10% born with CHD have Atrioventricular Septal Defects
8-11% born with CHD have Coarctation of the Aorta
9-14% born with CHD have Tetralogy of Fallot
10-11% born with CHD have Transposition of the Great Arteries
14-16% born with CHD have Ventricular Septal Defects
Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. Source: March of Dimes
It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications. Source: March of Dimes

Please continue to spread awareness about CHD's and please pray for all the babies, children, and adults who are battling congenital heart defects!!

[faithnlove99]

Feb. 8, 2010 at 12:15 AM

I voted this to be popular.I knw the loss it can bring.God bless