Congenital Heart Mom Katie shares her son's story of care.

On Friday, December 14th 2012, Katie Ryan gave birth to her son Joseph Benjamin in Natchitoches, Louisiana. Prepared to welcome a healthy newborn into their happy family of 6, Katie and her husband were caught off guard when Joseph began to exhibit some unusual symptoms shortly after birth.

After being transported by ambulance to Ochsner Health Network partner CHRISTUS St. Francis Cabrini Hospital in Alexandria, LA, Joseph was diagnosed with Hypoplastic Left Heart Syndrome - a severe congenital heart defect. At one day old, the Ryan’s newborn baby was quickly airlifted to Ochsner Medical Center in New Orleans to prepare for his first open heart surgery.

Before Joseph was born, Katie Ryan was not aware of how common congenital heart defects are in the United States, or that twice as many children lose their lives each year from CHD's than from all childhood cancers combined. As one of the most complex heart defects, HLHS occurs when most of the left side of the heart doesn’t develop as it should during pregnancy – leaving it small and underdeveloped. About 1 in every 5,000 children will develop this particular type of CHD.

The family was informed that treatment for HLHS typically requires a series of 3 surgeries: the Norwood procedure, the bidirectional Glenn procedure, and the Fontan procedure. At 17 days old, Joseph underwent his Norwood surgery on December 31st 2012. This was followed by a chest closure on January 7th 2013 and a reflux & G-Tube surgery on January 29th. After over a month in and out of the hospital, the Ryans were overjoyed to bring Joseph home on Monday, February 4th where he was reunited with his loving siblings Mary Adeline, Macie, Maggie, and Jacob.

Unfortunately, due to a staph infection and a virus, the family would return to New Orleans sooner than they hoped in the months leading up to Joseph's pre-Glenn heart cath and Glenn surgery in April 2013. Following this procedure, Joseph made a strong and successful recovery and was discharged on April 27th. In the time that has passed, he has not had any problems with his heart function. The family expects for him to undergo the third and final procedure in the series, the Fontan, this May.

Today, Joseph is an active, happy 4-year old who lives and breathes football. When he’s not watching his dad coach the high school team at Many, LA, he’s cheering on his favorite teams: the Texas Longhorns and the New Orleans Saints.

Katie notes that while no one would wish to become a “heart family”, Joseph’s journey has brought so many wonderful people into their lives - from the dedicated team of Ochsner Hospital for Children physicians and nurses, to the other heart parents and children that have become "like family" over the years. The Ryans live each day to the fullest, appreciating every moment and milestone and taking the time to travel and vacation whenever they can.

“Joseph has been such an amazing blessing. He is pure joy and has changed our family in so many ways. We are so thankful for our journey with him, and we have been surrounded with love and support from so many friends and family and will be forever grateful to everyone for their prayers for our sweet boy!”