A Special Visit from Some of the Faces of CHD

Thank you, thank you, THANK YOU to everyone who has shown their support and encouragement for The Faces of Congenital Heart Disease Awareness board on Pinterest.  Stefenie, Becca, and I have been absolutely overwhelmed by the response.  We went from just under 100 followers of the board on the day of it’s creation to more than 400 in less than 48 hours!  My own Lily and Superkid have been joined by the faces of 35 other people with special hearts…and that number seems to grow every time I check my email!

I want to give a shout-out to some special people who have donated their blogging star power to our cause:  Beckie from Infarrantly Creative, Sherry from Young House Love, and the Nester from Nesting Place were all super quick to respond when I asked for their help.  The number of followers and faces tripled in the hours after they repinned some of the kiddos.  If you get a chance, make sure you stop by their blogs and tell them how much you appreciate them!

Now, I have a treat for all of you!  Because of the way Pinterest works, there must be places online where we can go to get the pins for our board.  We wanted a way for people who don’t have blogs or care sites to be able to share their stories, too.  I’m pleased to be able to welcome some very special guests today here at A Trip to Holland.

Lucas Walters was born with a heart defect found when he was 4 days old. Doctors told us he had VSD. He spent several weeks in heart failure before being sent to Children’s Hospital in New Orleans for open heart surgery to make the repair when he was 3 months old. Lucas has recovered amazingly and is a healthy and happy 17 month old! Our family is very passionate about CHD awareness and we have a strong desire to support other families coping with CHD.

-From Lucas’s mom, Kellie

And here’s someone I’m really excited about–one of the people who fills heart moms like me with a lot of hope–ADULT survivor Jon Ritchings.

I was born on August 22, 1971 a little after 10 am and by 1 pm I was baptized and in the OR for the first of 2 Open Heart Surgeries. I was born with Pulmonary Atresia and a Small Right Ventricle and both my surgeries where to make a hole where the valve was supposed to be and then again to enlarge it. At 16 I developed Atrial Fibrilation and after exhausting all the medications, opted to have the bottom half of my heart controlled by a Pacemaker at the age of 21. At 30 my heart had enlarged and I entered Congestive Heart Failure. At 33 I developed Ventricular Tachycardia and had a Bi-Ventricular ICD inserted to solve the V-Tach problem and help my heart beat more efficiently. One year later I was looking at having a Double Valve Replacement, but my heart was not deemed healthy enough to survive Open Heart Surgery. After 6 years of hard work I have improved my heart function and I am once again facing that same surgery. Through all of this I have built a very active career and have lived a very active life. Some of my favorite things are kayaking, hiking, camping, wild life photography and playing my guitar. At this point there is no cure for CHD. It is a disease that impacts our life until the day we die. However, it does not mean that you can not have a life, if you are wiling to put forth some effort and focus on your goals.

– by Jon Ritchings

Taylor Vaughn Sparks was born on 2/17/2000. He was 6wks premature.  We had  a idea our life was going be changing just because he was our first born, but we had no idea  that CHD was coming into our life.  When he came into the world there was no crying.  I knew from tv that a baby needed to cry.  They took him away and they said he was very blue.  A transport team was called. I was still in the delivery room alone with the my doctor not knowing what was going on.  My husband came in and by the look on his face I knew it wasn’t good.  The transport team got there and we said our goodbyes. I cannot describe that feeling.  He was first shipped to Lake Charles then New Orleans.  My husband left to go with him and I was alone, I had my mom and sister, but you still feel alone.  New orleans is 3hrs away and we had no idea if our son was alive or not.  They diagnosed him having Transposition of the Great Vessels.  At 3wks old he had the switched.  He is now 10 1/2 and has gone through 4 heart caths.  He does have activity restrictions but he is alive and with us..   Thats all that matters.    Thank you God!

– from Taylor’s mom, Tiffany

My son Alex was born June 22, 2011.  Five hours after he was born, a nurse noticed that his nail beds were turning blue. They checked his oxygen level, and it was in the 50’s. They tried blow-by air and only got him up to the 70’s.  An Echocardiogram showed Tricuspid Atresia with Pulmonary Atresia. He was transferred to the local teaching hospital and spent two days in the NICU on Prostaglandins before being transferred to Children’s Hospital Boston. He had his first open heart surgery (BT Shunt) at 5 days old and was in the hospital for his first 3 weeks of life. I was by his side the whole time with frequent visits from his dad and two-year-old sister. Alex had his second open heart surgery (Bi-Directional Glenn) at four months of age, and will need one more open heart surgery at two years old (Fontan). Alex is a miracle and every day I am grateful for the exceptional care by his treatment team.

– From Alex’s mom, Jodi

Our Angel Aaron was born April 19, 2011 and lived to the tender age of 2 1/2 months when he left us to return to his heavenly home on July 7, 2011. He was diagnosed in utero with Hypoplastic Left Heart Syndrome. When he was born he was stabilized and then transferred to the local Children’s Hospital where they decided he really had Hypoplastic Right Heart/Tricuspid Atresia/Transposition of the Great Arteries (TGA). He had his first open heart surgery at 1 week old. He did great in his recovery until he had reoccurring bowel issues (NEC) that kept him in the hospital. He spent a majority of his short life there was able to be home with us for about 2 weeks before the PICC line he had gave him an infection which took him from us. We are so grateful to have had this Heart Hero in our lives and can’t wait to be with him again! We hope that because of him we are able to help spread more awareness on CHDs.

– from Aaron’s mom, Lisa

Thanks again to all of you who have so readily shown your support and helped the world learn more about the unfortunate prevalence of congenital heart defects.  You can read more about the Pinterest Awareness Challenge HERE.  It is my hope that increased awareness will lead to more research and legislation that will not only improve the lives of survivors, but make CHDs lose their status as the #1 heart defect.

*  Note:  I do want to clarify that nothing is pinned to The Faces of CHD board without the permission of parents or–in the case of adult survivors–those involved.  If you would like your child or yourself to be included, feel free to email me: triptoholland {at} gmail {dot} com.  If you are acquainted with someone who has a CHD story, we ask that you do not send us information in their behalf.  We require permission directly from the heart family.  Thank you for understanding.

Comments

  1. It has been wonderful to see the response and attention that our board has been getting for CHD. Great job putting this all togetehr Ruth and allowing me to help in the pinning! Also, thanks for sharing the above stories so everyone gets the chance for them to be heard!

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