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"Elizabeth Marie was diagnosed prenatally with Hypoplastic Left Heart Syndrome (HLHS) the day before Thanksgiving in 2006.
She was born April 2, 2007 and had her 1st stage of heart surgery on April 4, 2007. She had her 2nd stage of heart surgery on October 3, 2007. After spending eight and half long months in the hospital, Elizabeth came home for the first time on December 21, 2007.
Ethan was born via scheduled C-section on Monday, march 14, 2011 at 7:34am at the women's center at Carlisle regional medical center in Carlisle. Ethan was like any typical new born; he ate, slept and cried. 2 days later our pediatrician (Dr. Lynn Hoffman from Carlisle pediatrics) heard two hearts murmurs while conducting a routine examination on Ethan. As a result, Dr. Lynn explained to my wife Liz that Ethan would undergo some testing, an eco-cardiogram, to rule out any problems.
"This is my son Brenden. When he was born the doctors found a heart murmur and we were scheduled to have an appointment with the cardiologist shortly afterwards. He was found to have Tetrology of Fallot. He wasn't showing any symptoms, but the doctors said to look out for it and to expect surgery.
"Caroline Lee McKaskle was born on November 11, 2004 (also her Mommy's birthday) via c-section following an uncomplicated pregnancy. Within hours of her birth, she was life-flighted to Hershey in a snow storm. She was diagnosed with Pulmonary Atresia w/ Intact Ventricular Septum (PA/IVS), Tricuspid Atresia (TA) and Hypoplastic Right Ventricle (HRV).
"Jaymeson was born at Reading Hospital on March 27, 2009. We were able to have him with us for approximately 12 hours before he was starting to get lethargic and unable to nurse. The nurses took him to the nursery to give him a bath and to "wake him up" and "make him nice and mad" so he would feed when he got back. Approximately 10 minutes after they took him for his bath a nurse came in and told me that during his bath half his body turned blue and his blood oxygen levels on the top half of his body was only 60% and his lower half was down to 40%.
"On November 28, 2011 we found out that my youngest son had a congenital heart defect. For the first 3 months of my sweet Ethan's life he was very fussy (you could hardly put him down). He had projectile vomiting and had trouble eating. I took him to the doctor and told them that I thought he had acid reflux because my older son (who was heart healthy) had acid reflux and had many of the same symptoms. They put him on Zantac and sent us on our way. About a month later, his symptoms were even worse and I noticed that when he got upset he got blue around his lips.
"Our son Lucas was born in 2005 with a congenital heart defect called tetralogy of Fallot. As most hearts babies are, he was a tiny little thing, barely able to stay awake during a feeding, scaring us all the time, up until 3 weeks after his birth when the inevitable came and he finally turned "blue" signaling that it was time for his first surgery. It was, until that point, the most difficult day of our lives. After being rushed to Hershey Med, he was sent into surgery; the worst part of the day was when they took him out of my arms to go into the OR.
"On January 6, 2009, two very excited parents welcomed a 8 pd, 6 ounce little boy into the world. The parents were overjoyed, but were quickly worried when the doctors noticed he had been born with a heart murmur. The couple was told that 2 in 3 babies were born with one, not to worry, but they scheduled a pediatric cardiology appointment just in case. At only 6 days old, baby Cameron was taken to Children's Heart Group in Harrisburg PA.
We were blessed with a triplet pregnancy in 2012. All was going well until our 12 week appointment when our Maternal Fetal Medicine doctors told us something was not quite right with Baby B’s heart. Many ultrasounds later, it was still not confirmed what the outcome would be but we knew that we had to keep the babies in as long as possible to allow for the greatest chance for survival.
Michael was born in July of 2000. During his one week check-up with my midwife, she detected a loud heart murmur and recommended that we see a pediatrician right away. (We could hear the loud swishing just holding our ears to his chest!) Our pediatrician confirmed the heart murmur and recommended that we see a cardiologist at Hershey Medical Center as soon as possible. I remember making the phone call to Hershey; the receptionist told me that it would take several months to get in...then she double checked with the cardiologist and said we could be seen in a few days. I think at this point I started to realize that something serious could be going on!
Molli Faith was born July 10, 2014. Prior to birth we found out at 19 weeks Molli was to be born with Hypoplastic Left Heart Syndrome ( HLHS) and Total Anomalous Pulmonary Venus Return (TAPVR ). Once born she also developed Coarctation of the Aorta ( COA). At 4 days old Molli underwent the Norwood procedure and TAPVR repair.
Prenatally my four month old was diagnosed with an av canal defect and down syndrome. At the time I was scared what life would have in store for us, but new I needed to educate my self before Lucian arrived. I met with Dr. Clark while I was still pregant and he assured me he would need surgery, but it's a very common surgery with a high success rate. Leaving the hospital I felt some relief but still a little unsettled knowing my baby would have to have open heart surgery.
Links that may help you …
Dedicated to supporting individuals and families
Adult Congenital Heart Association
The mission of the Adult Congenital Heart Association is to improve and extend the lives of the millions born with heart defects through education, advocacy and the promotion of research.
Children's Heart Group
Penn State Children's Heart Group
Penn State Children's Heart Group is a team of experienced pediatric cardiologists and pediatric and congenital heart surgeons within Penn State Children's Hospital.
KEEPING FAMILIES CLOSE®
The Ronald McDonald House®
RMHC of Central PA gives a family with a sick child what they need most — each other.