CHD AWARENESS WEEK

Susanne - posted on 02/10/2011

CHD Survivors and Angels

Sairah Grace Casto-Hodge's story



This is the story of my daughter who is my CHD survivor



My name is Sairah Grace Casto-Hodge. I am 18 yea...rs old. I was born with a congenital heart defect called Transposition of the greater arteries & pulmonary stenosis, where I had to have a couple of open heart surgeries and a few heart caths. I have also had 2 major spine surgeries in 2009.



My mom said that her pregnancy went fine and that the doctors said I was healthy and a good size. Then on October 19, 1992 at 6:57pm I was born and within 2 hours they told my family I was turning blue and I had something wrong with my heart. They transported me to Long Island Jewish Hospital in New York. (My mom said she never forgot that the ambulance had Ninja Turtles all over it). There is where the Cardiologist decided I needed open heart surgery. Dr. Joseph Amato was my Pediatric Cardiologic surgeon. My family said he was an amazing Doctor and he was very caring and gave my parents lots of information and so when I was 7 days old I had the open heart surgery called the Switch, which took 10 hours in the operating room. I was given a 50/50 chance and I was not promised tomorrow.



My years growing up I have had a few heart caths, balloons and stints. I had my 2nd open heart surgery in April of 2008. So I did not finish my freshman year. One of the common sides affects of having a heart condition and having open heart surgery is Scoliosis of the spine. They say due to the fact of the heart and also ribs being cracked that it pulls you forward. In Jr. High I started wearing a night time back brace. Going into my freshman year of High school I had to wear a full time back brace. Then I had to have 2 spinal fusion surgeries in 2009 and now I have 2 rods in my spine and 24 screws. I had the first spine surgery with 2 rods 18 screws in Aug. of 2009, but then due to complications I had to have another spine surgery which left me now with 2 rods and 24 screws and only 2 discs left in my back. I wore a back brace and had to use a walker. Lots of physical therapy, pain and doctors appt. This caused me to miss the first half of my junior year. I always seem to get sick easily so I miss a lot of school, but I push to stay on top of things. As far as my heart I still have small issues, but I do not let it stand in my way. With medication and my desire to be strong and never give up I enjoy life. “My say on life is to live OUTSIDE the BUBBLE”.



My family is a very important part of my life. My parents are always by my side when I go through all my medical issues. I also have a 10 year old sister, Sierra who calls me her hero, because she says I am a fighter and she is proud to be my sister. Even at school my sister did a report on me. I sometimes feel bad that I take my parents away from her when I am in the hospital, but she understands and we have a close bond. I love her to pieces.



I am a senior at Orange Park High School. My future goal is to be a trauma nurse in a pediatric hospital or sports medicine. I love working with children and I want to be able to help them heal and also I will be able to understand what they are going through. It is hard for children with medical conditions, especially for teenagers. I can give them support in different ways. Many people will tell you “I know what you’re going through”, well unless they have gone through it, they have no idea. For a teenager, who just wanted to enjoy the homecoming dances and the football games, like everyone else does.



My family and I are very actively involved with different organizations in my area. I am a part of Mended Little Hearts, Starlight Children’s Foundation, American Heart Assoc., Dreams Come True and Songs of Love. I am the oldest in my Mended Little Hearts group and I think parents like that because they can see that I am 18 now and that their child could have a great future ahead of them also. It gives them hope for the future. We are active members because I am a teenager that was born with a congenital heart defect and I am also involved by doing community service for them. I go to the local children’s hospital and go around visiting other children that are sick. I meet many kids with the different organizations I am in, so when I hear they are not well I try to go and cheer them up. I am always willing to do for others and try to give back, because so many have done for me. So many prayers have been said on my behalf and I am always praying for them. I enjoy visiting kids in the hospital, just to put a smile on their face and to let them know its ok. I always joke and tease them and tell them how to take control of the nurses and be a wise guy. I am a singer and I sing a lot for the community by singing the National Anthem for different organizations and I also do concerts. I did my very own concert at the local Fair this year. I am also vocalist of the year for 2009 for the Orange Blossom Country Music Assoc. Inc. I even got to be one of the opening singing acts for the country singer “Linda Davis”.



I also just found out that the American Heart Association made me the face of the First Coast for the “Go Red” the fight against heart disease for 2011. I will have to speak at events, be in a fashion show and go for a photo shoot so I can be on the advertisement for Go Red. I am so honored and excited because I want EVERYONE in the world to under stand how important the fight for heart disease is.





I love to hang out with my family and friends. I enjoy going shopping, watching movies and I love to sing.



God has blessed me with a great voice and I love going around singing for the community. I am the National Anthem Singer for our American Heart Walk here in Jacksonville, FL. I love singing for the children and the elderly also at the nursing homes. I am also actively involved with Songs of Love, which is an organization that makers personalized CD’s for seriously ill kids and I had the opportunity to sing and record a song for a sick little girl. The feeling that day made me feel sooooo honored and special that Songs of Love chose me to do this for that little girl. I look at life differently. I have almost lost my life a couple of times, and I am still here, so I know God wants me to do all I can to help others. I want to be able to give back to those who have given to me.



For my Sweet 16 it was soooooooo special to me because it was a Sweet 16t Birthday party for me and it was also a Dreams Come True Fundraiser. On the invitations I requested to the guest in lieu of gifts, to please donate in my honor to Dreams Come True. The money I raised sent a sweet little girl named Hannah who was born with a heart defect & Downs, to Give Kids the World at Disney World in Orlando, FL.



Well a couple of years have gone by and now I am getting ready to turn 18 and I told my parents I would like to have another special birthday party. I am turning 18 and that means I will be an adult. I think I need to step up to the plate and see what I can start off with as I am entering the world of adulthood. So for my 18th birthday I am doing the same thing, I am having a big birthday party at the Deep Blue at the Jacksonville Landing and I am requesting in lieu of gifts that the guest would donate to Dreams Come True in my honor and this time a 3 year old little girl Callie, who has had 5 open heart surgeries will get to have her dream at Disney World. Yes, I could just have a birthday party have fun and get lots of presents, but know what “I already have the best gift ever, my life”. I wanted to share the joy with others.



My second step into adulthood is that, I just found out that the American Heart Association made me the face of the First Coast for the “Go Red” the fight against heart disease for 2011. I will have to speak at events, be in a fashion show and go for a photo shoot so I can be on the advertisement for Go Red. I am so honored and excited because I want EVERYONE in the world to under stand how important the fight for heart disease is.





I have been through so much in my short life, but I believe God has a reason for everything. He has made me stronger. Some kids could care less about their lives and what they do with it, but I have to wonder will my live continue tomorrow, so do not take your life for granted and do stupid stuff.



My advice to all children born with a heart defect is to be a kid. Unless the Doctors say you can NOT do something, then you need to listen, otherwise do not sit back and waste life away. Enjoy it and live it to the fullest. I have done many sports. I have figured skated for 5 years and I have earned 32 medals. I am a singer. I have future plans to be in the medical field. This is how my parents raised me. They told me “I was never promised tomorrow, so live and enjoy life today”.







Remember:

“LIVE LIFE TO THE FULLEST & OUTSIDE THE BUBBLE”



God Bless you all.



Sairah Grace Hodge



sairahmom@att.net

Erin - posted on 02/20/2010

Julia - I am the group coordinator for Mended Little Hearts of Mississippi. We were just chartered last month. We celebrated CHD week with a state proclamation (w/ TV coverage), a TV interview and newspaper article, a CHD Valentine's party with our kids, and putting up CHD displays in our children's hospital and its clinics. It was our first year doing this and we are so excited about getting the word out to so many people!! We can't wait to see what we can do next year!