February 7th-14th is Congenital Heart Defect Awareness Week. Last year I posted this about Heart Week.
This year, I thought it would share a little more of Evin's story in an effort to spread awareness.
If you had asked me a couple of years ago what I knew about congenital heart defects, I probably wouldn't have been able to give much, if any, accurate information. In fact, as my OB was standing in front of Mitch and me, beginning to tell me what was wrong with our seemingly perfect 1 1/2 day old baby, I had no idea what she was talking about. She said something about how Evin's coloring was "off", they had taken her to the NICU, and they were investigating further, but they thought she had Tetralogy of Fallot (which at the time I scribbled down as Tetralogy of Flow, because, again, I had no idea what she was talking about). Then she said Evin would be taken to Cook Children's immediately. She followed that up by dropping a bomb- she would have to have surgery to repair her heart. It sucked all the wind out of me and my mind was foggy, but racing all at the same time. It was this indescribable feeling that I will never forget. My baby's life was on the line, and I knew nothing about the condition of her heart, much less the anatomy of a healthy heart.
She went from this...
to this...
to this, in a matter of hours.
Congenital Heart Defects (CHDs) occur in 1 in every 100 babies that are born. Since having Evin, I have heard of so many others who have, or know of someone who has a heart baby. It is sickeningly prevalent.
Basic facts about CHDs:
-A Congenital Heart Defect is when part of the heart, or several parts of the heart, form abnormally during the early weeks of pregnancy.
-CHDs are the leading cause of birth-defect related death.
-1/3 of children born with a CHD need a life-saving treatment before they are 1 year old.
-Today more than 1 million American adults are living with a CHD.
The most important fact I can share, and the one I wish I had known about before Evin was born, is this:
-Heart
defects can be detected (if they were not detected in utero) with a
simple, painless, noninvasive test called a pulse oximetry test. Many states are passing laws that require this test to be administered when the baby is 24 hours old. Even still, don't assume that it is just going to be done; ask
for one within the first 24 hours of your baby's life.
Many babies, like Evin, are born and appear to be perfect. The defect cannot be detected until 24 hours after birth, when all babies' PDA valves close. This is when Evin's defect was detected, thanks to a fantastic nurse who picked up on the symptoms that Evin was showing as she did her newborn screenings. Some babies are taken home with their parents under the impression that they are perfectly healthy, and they are in fact critically ill and are in heart failure. Pulse ox tests can prevent these babies from being taken home.
This is my hero.
Evin's defects are very special to her, and while several of her defects are common, it isn't that common to have all of them together. She has 5 defects and through lots of research I have yet to find a diagram or listing of another heart that is just like hers. I did find that just 1 of her defects (Double Outlet Right Ventricle) occurs in 1 in every 10,000 births. Put that with all of her other defects, and she was born with an extremely special heart.
She had heart surgery at 6 days old, and again at 5 1/2 months old.
Although her heart is "fixed", it is not a forever fix. She will have to have a valve replacement surgery in about 15-20 years, or whenever her valve wears out. She will have to be closely followed by a cardiologist for the rest of her life. This is her reality as a heart baby, while my reality is having constant fear that although she is "fixed", something could resurface and cause more issues. I also fear, that as she gets older, she will have the same fears I do.
I am so very thankful for my heart girl and the many blessings she brings us. Every night as I rock her to sleep, I pray. I thank God for her surgeon and for giving him the capable hands to mend her heart. I pray for other heart babies and their families. I pray for Evin's future. I am in a club that I didn't want to be in; a club that I didn't even know existed. I am in The Heart Mommy Club, and I am so very proud of my Heart Hero.
Congenital Heart Disease is severely underfunded relative to the prevalence of the disease.
Spread the word.
Be aware.
Wear red.
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