Congenital heart defects are the most common type of birth defect. 1%....40,000 babies are affected by heart defects every year. That number continues to grow.
With today's advancements in technology and medicine, many heart defects are discovered while the baby is in utero. This can help prepare the parents and medical professionals. It may alter the birthing process or timing or they may choose to deliver the baby at a different hospital. Unfortunately, we were unaware of Hailey's heart defect prior to her being born. However, Hailey had a heart defect that is generally not immediately life threatening. Finding out about it prenatally, would not have changed our labor plans or hospital. Not all babies are that fortunate.
As many of you know, Hailey was born with a large VSD (ventricular septal defect) and several small ASDs (atrial septal defect). To the neonatalogists, it sounded like a "slight" heart murmur. However, the way it works, the larger the hole the softer the sound. After being released from the NICU, we headed to Children's for an echo. It is a very detailed (very long and frightening to already scared parents) ultrasound of the heart. Her heart defect was confirmed and we were given the diagnosis and our action plan. It was scary to hear that our daughter was about to have open heart surgery, but even more scary was telling us to go home...watch...and wait. I'll never forget that St. Patrick's Day. It was the day, I thought there was a chance I would lose my little girl.
Here is Hailey the day we found out about her heart defect and a picture of her one year later.
We were incredibly lucky. Hailey had a heart defect that statistically has over 99% (complication free) success rate. VSDs are the most common heart defect that cardiologists see in infants. 20-30% of heart defects are VSDs. Those statistics are supposed to be reassuring. Now, looking back, they are. Two years ago, they were very frightening, but we made it through it. My daughter didn't have an option for surgery. It was life or death. I'm grateful for all of the research, all of the technology, and the dedicated medical professionals that made my daughter's surgery a success. Hailey "should" not need anything else other than annual check-ups to verify that her heart is in perfect working order.
One week prior to surgery and the morning of her surgery.
Here are photos from the week of Hailey's OHS. The first is the day after. She was just removed from the ventilator and was starting to get hungry. The middle picture was 2 days later when she was moved out of CICU. The last photo is 3 days later. We were already home!
This beautiful picture was one month post surgery. Her coloring was better...she was gaining weight...she was eating...she had more spunk than every before!
This is Hailey on her one year Heart-versary and then today!
I cried the day before Hailey's heart surgery as I gave her a bath. I looked at that perfect, smooth chest. I didn't want her having a scar. Quite vain of me. Hailey's zipper scar is not viewed as a scar anymore. It is a reminder of what saved her life. It is a reminder of how strong she is and what she has been through (even though she will never remember it). I am thankful for that scar.
So I celebrate CHD Awareness month by sharing Hailey's story and trying to share more information about this birth defect. If you know of anyone that could benefit from this information, please share my blog. My friend, Leah, has compiled a fabulous list of blogs and links about other experiences with open heart surgery and suggestions for preparing here.
Happy Heart Month!!!