For the first day of Congenital Heart Defect Awareness Week (February 7-14), I plan to educate. If you follow Claire’s blog, you already know that she was born with a critical congenital heart defect (CCHD). There are actually 7 CCHDs in total, but many, many CHDs.
In the US, about 4,800 babies born each year have one of seven CCHDs:
- Hypoplastic left heart syndrome
- Pulmonary atresia (with intact septum)
- Tetralogy of Fallot
- Total anomalous pulmonary venous return
- Transposition of the great arteries
- Tricuspid atresia
- Truncus arteriousus
Babies born with one of these CCHDs are at significant risk for death or disability if their CCHD is not diagnosed and treated soon birth. These seven CCHDs among some babies potentially can be detected using pulse oximetry screening, which is a test to determine the amount of oxygen in the blood and pulse rate. I plan to do a post this week about pulse oximetry screening. Other heart defects can be just as severe as these seven CCHDs and also require treatment soon after birth. However, pulse oximetry screening may not detect these heart defects as consistently as the seven CCHDs.
Claire has made a lot of “heart friends” over the past year through blogs. Once your child is diagnosed with a CHD, you become a part of a huge community with open arms. I thought I would share with you a few of Claire’s friends, their CHD diagnoses, and their blog site (if they have one).
Claire was diagnosed with Tetralogy of Fallot with a Right Aortic Arch when I was about 20 weeks pregnant. It was something we totally were NOT expecting to hear that day. My husband had not even gone to the fetal echo appointment because I just knew they wouldn’t find anything wrong. I invited my mom, sister, and mother in law to go so they would get an opportunity to see Claire on the ultrasound. What I thought was going to be a 10-15 test ended up lasting an hour. As the hour went on, I knew something was wrong. The doctor explained that our daughter had Tetralogy of Fallot. I burst into tears. My mom said the next words out of his mouth were “This is 100% fixable.” Claire’s heart was fixed on February 23, 2011. The surgeon was able to close her large VSD (ventricular septal defect – large whole between the bottom ventricles in her heart) with a piece of cow skin. He was also able to carve away some of the extra muscle tissue blocking Claire’s Pulmonary Artery and to trim the “curtains” in her Pulmonary Valve to allow better blood flow to Claire’s lungs. Claire still has a heart murmur and probably always will due to the stenosis. But the blood in her heart is not mixing anymore and she has good blood flow. She is definitely our heart hero!!
Claire’s friend, Mason, also has ToF. He had a scary experience with his and almost died several times at the hospital. Mason has not had his full repair yet, but it’s coming up this summer. You can follow Mason’s heart journey at http://preciousmason.blogspot.com/.
Claire’s has a special heart angel friend named Charlotte. Many of you may remember Charlotte from collecting books for the Books for Charley project last year. Claire is blessed to have an angel heart friend looking down on her each day. Charlotte was diagnosed with Pulmonary Atresia with Intact Ventricular Septum and also Hypoplastic Right Heart Syndrome. This basically means that Charlotte was born with only half a heart. Charlotte’s sweet little was cut last year in May when God took his angel home. You can follow Charlotte’s heart journey (and the journey of her new brother or sister!!) at http://littlemissritchie.blogspot.com/.
Claire’s friend, Greyson, also has ToF like Claire and Mason. He is a growing, big boy and I believe has another surgery ahead of him (I could be wrong). His birthday is one day different than Claire’s birthday and he loves John Deere like Claire! You can follow Greyson’s heart journey at http://greysonknigge.blogspot.com/.
You have recently been reading about Claire’s friend Parker. He lives close by us, yet we haven’t had a chance to get together since he was born. Parker was born with Intrauterine Growth Restriction so although he was almost full term, he weighed less than Claire did. After he was born, the doctors discovered that Parker also had a special heart. He has several different congenital anomalies with a Patent Foramen Ovale and paramembranous. Parker is doing great and the cardiologists are just watching his heart. Parker does not have a blog, but you can find updates on him on Facebook at Baby Parker Mills.
Caden is a new heart friend of Claire’s. Well new in the fact that I just started following his blog not too long ago. Caden was born with critical aortic stenosis and coarction of the aorta with several holes in his heart. Caden’s parents had NO idea that he had any of these CHDs before he was born. It wasn’t until his birth that the doctors discovered that something wasn’t right. I cannot imagine not having that time to process all of those feelings and thoughts before your child is born and then being hit with it out of the blue after thinking you were giving birth to a perfectly healthy child. You can follow Caden’s blog at http://thestanleyclan.blogspot.com/.
These are just a few of Claire’s heart buddies. And as you can see, there are so many children affected by so many different CHDs. We have got to continue to bring awareness of CHD to everyone. If you have time, check out these children’s’ blogs. It will bring a whole new perspective to just how many families are affected by CHD every day. I would sit here and give you definitions and explanations of all of the 7 CCHDs and other CHDs, but it gets too technical. This way, by reading the other heart blogs, you put a FACE to the CHD. And that, my friends, makes it real.
The Scott Family
PS - February 19th a blood drive will be held in Pollocksville at CarolinaEast Internal Medicine (formerly or Eastern Carolina Internal Medicine). Please mark this day on your calendar and plan to donate a pint of blood in honor of Claire. She received so many blood transfusions while in the NICU and during both surgeries, it saved her life on so many levels. Please consider doing this to help save others' lives. I will post more details in a later post. Just wanted you to SAVE THE DATE!