Oakley’s story as told by his Mommy:
Oakley was born September 20, 2012. The day we were being discharged from the hospital the pediatrician heard a murmur. At one week old, we took Oakley for an echocardiogram, and he was diagnosed with an Atrial Septal Defect (ASD) and Ventricular Septal Defect (VSD). A hole in the wall between the two upper collecting chambers (ASD) or between the two bottom pumping chambers (VSD). We were told the holes were small and would most likely close on their own and not cause any problems.
On October 8, 2012 I took Oakley to the pediatrician. He had stopped eating well over the weekend, and would cry every time I tried to wake him up. He had displayed other symptoms prior to this: high respiratory rate, sweating, being lethargic. My husband and I talked to the on call doctors at the hospital over the weekend, but didn’t seem to put it all together. The pediatrician checked him over; he had lost weight since the week before. I knew this was not good news. His first thought was maybe my milk supply was too low (although this didn’t make any sense, because Oakley had gained about 12 ounces in his first week being home). Finally, it was decided we would take Oakley to the small, local hospital and get him admitted for dehydration and run tests to see what was causing it. Before we left the pediatrician’s office he decided to check Oakley’s pulse ox. As the numbers popped up I saw the 93% (the average person would be closer to 100%).
When we got to the hospital they began running multiple tests on Oakley. Blood, urine, stool, and a chest x-ray were all done. After the pediatrician’s office closed, he came over to the hospital to check out Oakley’s results. This was when we got the scariest news of our lives.
Oakley’s heart was severely enlarged and he was in heart failure. I don’t even remember everything that the pediatrician said. I just remember interrupting him and saying “IS MY BABY GOING TO BE OKAY?!” He told me he wasn’t sure, but that he would definitely have to be transferred to a bigger hospital. Oakley was med-flighted by helicopter, and I was able to fly with him. Upon our arrival to Mercy Hospital Springfield, Oakley was immediately intubated. Once we were finally able to talk to the cardiologist he told us that he suspected a “coarctation of the aortic arch.” (Coarctation of the aorta is a narrowing of the aorta, the main blood vessel carrying oxygen-rich blood from the left ventricle of the heart to all of the organs of the body.) They wanted to wait until morning to get a clearer echo since his heart was so enlarged.
The next evening we decided to transfer Oakley to St. Louis Children’s Hospital. The cardiologists in Springfield were not 100% sure if he had the coarctation or not. Even if he did, they were unable to actually perform surgery at this hospital. By Wednesday morning (October 10th) Oakley was being prepped for surgery at STL Children’s. His surgery went well, though we did find out that he also has a bicuspid aortic valve. (A bicuspid aortic valve is an aortic valve that only has two leaflets, instead of three. The aortic valve regulates blood flow from the heart into the aorta, the major blood vessel that brings blood to the body.)
Oakley is now 5 months old and doing very well, with the exception of slow weight gain. He just had a cardiologist follow up on February 12. His ASD and VSD are closing, and his coarc repair is great. His bicuspid aortic valve is okay for now. Oakley was cleared from follow ups until September.
❤ Heart Awareness Month ❤ Meet our next February 26th Heart Warrior Ethan. Son to Erica Butler Thomas.
Ethan’s story as told by his Mommy:
On February 5, 2012 I was getting ready to take Ethan to his 2 month checkup and noticed he was breathing rapidly and just looked like he was in distress. I immediately called 911 and he was taken to the local hospital as a precaution. I was told over and over that Ethan "looked good", but as his mother, I felt it in my soul that something was wrong.
I dismissed doctor after doctor until someone would listen and take my concern seriously. An echocardiogram was done on his heart and a major heart defect was discovered. Ethan had a severe coarctation of the aorta and a bicuspid valve. An aortic coarctation is a narrowing of part of the aorta (the major artery leading out of the heart). Bicuspid valve: The aortic valve is a one-way valve between the heart and the aorta, the main artery from the heart that distributes oxygen-rich blood to the body. Normally, the aortic valve has three small flaps or leaflets that open widely and close securely to regulate blood flow, allowing blood to flow from the heart to the aorta and preventing blood from flowing backwards into the heart. Ethan's coarctation was so severe that he was immediately medically transported to Texas Children's Hospital in Houston.
Upon arrival, emergency surgery was scheduled for the following morning because he was having heart failure. Ethan's gifted surgical team (Dr. Heinle at Texas Children's Hospital) was able to make the repair to the aorta, but as of today, his heart is not getting stronger. Doctors are running additional test later in the week to see if he suffered a heart attack at some point and if the heart is damaged beyond repair.
It has been discovered that Ethan has a condition called Left ventricular non-compaction (LVNC) as well as an abnormal heart rhythm (long QT line). Left ventricular non-compaction (LVNC) is a rare genetic disease of the heart muscle. Compaction is a process that occurs during the development of the heart when a baby is in the womb. If this process is not complete, the inside of the heart muscle (the one in contact with the blood) will look spongy or “trabeculated”. Normally, it is smooth. Originally, non-compaction was diagnosed very rarely. It seemed to be associated with dangerous heart rhythms and, often, severe weakness of the heart muscle.
As of today we are researching, learning and trying to figure out the world of CHD.
I asked his Mom Erica if they knew anything about his heart before the day of his 2 month checkup and she said no.. absolutely nothing. They even did a level 2 ultrasound when she was pregnant and it wasn’t caught.
Please show Ethan some love and support by visiting and liking his Facebook page:https://www.facebook.com/
**I had one extra heart story to share this month and I decided to share Ethan as the second February 26th heart baby because my son (Lily’s oldest brother).. his name is Ethan and today is his 11th birthday. We will be praying for baby Ethan today and until he gets better!!