CHD Awereness

October 17, 2017
By Anonymous

Today in the US its very rare for a baby to be born with a heart defect. There’s only fewer than 20,000 cases a year with baby’s born with a heart condition.(1 in 100 babies are born with a CHD) Now we are a family of seven with a sister of a heart condition. We will never be a normal family anymore because now we are an extraordinary family that has been bless several times. So am here to tell you the story of Brinslee.


It was the year of 2016, the month was turning August and my sister is going to be born! On August  19 2016, my little sister Brinslee was born. The second day when she was born the doctor told my mom she had a heart murmur. So my mom and dad had to stay 6 days in the hospital. While me and my other sisters stayed with my grandma and grandpa that week. Then on the seventh day we could finally go home.


On the 24 of August 2016, my mom took Brinslee to her cardiologist and that’s when she  found out of Brinslee condition. Which  she was born with “TOF”- tetralogy of fallot (A Heart Defect that features four.)

•“TOF-DEFECTS ARE;”   oxygen poor blood to flow out of the heart and into the rest of the body.

•A hole between the lower chambers of the heart

•An obstruction from the heart to the lungs

• The aorta (blood vessel) lies over the hole in the lower chambers


•The muscle surrounding the lower right chambers becomes overly thickened

Once my mom found out what the four features were, she also found out more defects. Which was four more defects like:

•Ventricular septal defect (VSD)

•Subpulmonary and pulmonary valve stenosis

•Malalignment of aorta

•Right ventricle hypertrophy

The cardiologist also told my mom that due to her pulmonary valve being narrow and shortened, Brinslee would have to have her pulmonary valve replaced every 10 years for her lifetime. Moreover, the cardiologist informed my mom she is expecting Brinslee to have her second open heart surgery around the ages of 10 to 13ish, if everything went accordingly. So after she found out all that information about brinslee. she had to take brinslee every other Monday to her heart team in wolfson’s specialty center in lake city. So every other Monday they check her out on her heart. So what they did in order to check her was  they did EKG’S, Echocardiograms, Oxygen level checks (pulse ox), and  Blood pressure taken. And they did that every other Monday until her procedure. Her procedure was on October 19 2016, and that was her first heart cath.(her heart was in failure) 


Furthermore, three days later they called my mom and they schedule  her open heart surgery for November 16, 2016.  In that time frame leading up to her surgery, we were all getting prepared. My mom was calling her mom to let her know when her surgery is, and that we were getting our bags ready for the week, because we still had school. So we were all getting our stuff ready for the week that Brinslee would be in the hospital.  On August 13, 2016 my mom dropped me and the rest of my sisters off at my grandma’s that Sunday. And my mom dad and Brinslee headed up to Wolfson’s Children’s Hospital in Jacksonville on the 15th of November, the day before her surgery. My parents  sign papers and the doctors was going over on how the surgery was going to be, then that night they settled into the Ronald McDonald house.


THE SURGERY DAY! It’s finally November 16, 2016 and today’s the big day for Brinslee. Today was the day it changed her life, my mom and dad life's, and ours. It took a couple of months to get to this day and it’s finally here! After a five hour surgery the heart surgeon came out and told my parent that the surgery went well and Brinslee was in the intensive recovery unit. The heart surgeon said that he tried to save as much of her pulmonary valve as possible because as soon as he got into her chest  he realized that it was actually inverted, it was sideways instead of being up and down like a normal pulmonary valve is supposed to be. So that was surprising for him, but  in all it went well. Then they shook the surgeon hand. Then they headed into the holding room, where they waited for a nurse to come get my mom and dad to take them to Brinslee room. Then  When a nurse came to take my mom and dad to her room, she was already hooked up and sedated. So after a five hour surgery my mom and dad could see her, but she was sleeping while my mom and dad was in her room.  The surgery day still was going on all day and  night. My mom said there was nurses coming in and out of the room to make sure her vitals were good, and she wasn’t running a temperature, and she was  comfortable as far as pain medication. The nurses were making sure all her lines where the right way and working. After the first couple of hours  it was constant 24-hour care from the nurses. So the surgery day was a very long day for my mom and dad. And then the rest of the week my mom and dad did the same routine every day. Wake up, go see Brinslee, eat lunch, go see Brinslee, go eat dinner, go see Brinslee until 10 then headed for bed. And they did that every day!


Then on Sunday the  20, 2016 was when we went to the zoo, and then to the hospital to see Brinslee, my mom and dad. But we couldn’t see Brinslee, but we did spend time with our parents. The day Brinslee, my mom, and dad could come home was on Monday the 21, 2016.   So Today for a baby to be born with a heart defect is very rare. Still today only  20,000 fewer cases a year of babies are born with a heart condition. (1 in 100 babies are born with a CHD), and my sister was one of them! Thank you for listening to her story!#CHDawarness#CHD babies  

The author's comments:

I was inspired to write this piece because, it was a life experience for all of us.(My family) Mentally, physically, and emontionly.

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