Sunday, July 12, 2009


This is an important post that everyone should read. Feel free to pass along the link to my blog.
I am going to be using my blog to raise awareness about Congenital Heart Defects.
I am sure some of you are thinking what on Earth is a Congenital Heart Defect? This disease was unknown to me until I met a wonderful woman named Rene and her son Tommy. A congenital heart defect or CHD is a birth defect. That is caused by an incomplete or an abnormal development in the fetus's heart. It occurs in the early weeks of a pregnancy. Some of the defects are known to have been linked to other genetic disorders such as Down's Syndrome but MOST of Congenital Heart Defects causes are unknown. Sometimes there are other medical problems that are accompanied with CHD. I know what you are thinking this would never happen to my child. Hopefully it never will but here are some very alarming statistics.

400,000 babies in the World are born with Congenital Heart Defects a year. Each day 10,830 babies are born in the US out of those 411 will have a birth defect. 87 of those babies will have a congenital heart defect. Please remember that is EVERY DAY! 365 days a year! According to the March of Dimes CHD is the #1 birth defect.In the US more than 25,000 babies are born with CHD each year. It doesn't discriminate by gender race or origin. There doesn't have to be a history of CHD in the family. The parents don't do anything wrong. The mothers are seldom using drugs or alcohol during the pregnancy. If you are Pregnant, or know someone who is or are planning on getting pregnant please request that you or they get a Level 2 ultrasound to check the heart. After the baby is born please request that they take your child's blood pressure on ALL FOUR limbs. You should be sure that you request your newborn have a pulse oximeter test done before he or she leaves the hospital. It is not invasive and is one of the quickest ways to measure the oxygen levels in your baby's blood.
Let me introduce you to Tommy. Tommy was born 7 weeks premature with a combination
of heart defects and a poor swallow. His heart diagnosis is as follows: Double Inlet Left Ventricle with Transposition of the Great Arteries, Pulmonary Stenosis, Ventricle Septal Defect, and Patent Ductus Ateriosis. This is also known as "single ventricle" or "univentricle". It basically means the blood containing oxygen and the blood without oxygen meet in one place in his heart, mix together, and recirculate. This gives him low oxygen saturation levels in his blood. His poor swallow, also know as "dysphagia" is caused by Cricopharyngeal Dysfunction. The muscle at the top of his esophagus works sporadically. It causes Tommy to aspirate his saliva into his lungs. For this reason, Tommy is fed exclusively by a feeding pump. Tommy had open heart surgery at 4 weeks old, and because of his poor swallow,he could not make it off of the ventilator for 5 weeks. He required a procedure called a Tracheotomy to breathe on his own. Because of the breathing tube,he now has a condition called severe subglottic stenosis. This is scar tissue below the vocal cords. He cannot breathe without his trach. The aspirations caused another condition with the generic term "lung disease". His bronchial tissues are inflamed causing Pulmonary Hypertension. He takes a combination of medicines and requires oxygen 24 hours a day.

Could you imagine having open heart surgery at FOUR weeks old? Most people are at home with their newborn not waiting in a hospital while your child has a major surgery just to survive. Tommy had his first real breath of air without his trach at 23 months. Sadly Tommy passed away August 20th 2008. His heart went into lethal arrhythmia from undiagnosed bronchopneumonia. That was about 5 weeks before his second birthday. Tommy was a bright child with big beautiful blue eyes. His smile would make you smile. He was full of charm and life. He was medically fragile but he was definitely a WARRIOR. He had such a strong will. He brought joy and hope to so many people. Tommy loved to play with bubbles and watch Finding Nemo. His favorite song was The Itsy Bitsy Spider. He is loved and missed by everyone who was blessed to know him. Now Tommy is in Heaven and he is singing and playing. I know Tommy is looking down on those who love him. He will always have a Nemo shaped spot in my heart.
Please remember this information, pass it along. Help me raise awareness for CHD. In Memory of Tommy who is Forever ONE!


  1. Love you, Sheila. Thank you for raising awareness in my sweet Tommy's name. He's blowing you kisses from Heaven! XOXO!

    Forever, Tommy's Mommy

  2. This is a great post Sheila! I will blog about it too soon!

  3. I too remember Tommy and all his medical problems. It was a very sad time when he passed. It's wonderful of you to keep him in your thoughts still. You're so sweet!


  4. How awful. Thank you Sheila. I'd love links to the March of Dimes site.