Send some good thoughts Addie’s way. (And to her amazing parents, Patty and Josh!) She’s about two weeks post-op from her Fontan procedure and tricuspid valve repair. The surgery went well, but she’s still inpatient and recovering. Here’s an adorably sweet picture of her tea party with the therapy dog. We love you, sweet Addie girl!
Advice from Antonio: The unique experience of being a physician and a CHD grandparent
Dr. Antonio Falcon is the grandfather of heart warrior Addie. He shares his feelings of the overwhelming joy of being a grandparent, and the overwhelming sorrow that comes with a CHD diagnosis. He has a unique experience of being a physician with a grandchild diagnosed with Heterotaxy and CHD. After 42 years of practicing medicine he is now realizing the impact his patients feel when he gives a life-long diagnosis.
Nina is a spunky five-year-old who has already been through more in her lifetime than most will ever experience. She’s full of sass and her wise advice is on point. Listen to Nina’s advice for kids and parents on their heart journey. She gives me so much hope!
Here’s a little background on Nina, from her Mom, Lani:
Nina had her first surgery at Dell Children’s in Austin, TX and hit a number of complications: she suffered hemi-diaphragm paralysis and was ventilator-dependent for 2 months; she suffered bilateral vocal cord paralysis and was trach-dependent for 15 months; she could only digest small volumes of breast milk via an NG tube because of poor blood perfusion to her gut thanks to her MAPCAs (major aortopulmonary collateral arteries), and she had multiple cases of “medical NEC” along the way. Nina’s first year or so of life was a real doozy, and she didn’t come home from the hospital until she was 8.5 months old — something we definitely hadn’t planned for. Her last 3 heart surgeries have been out at Stanford Children’s in Palo Alto, CA and she has exceeded all expectations. She loves monkey bars, dinosaurs, acting, karaoke, and sushi. We never dreamed she’d be doing this well, and we’re so thankful that we found the perfect surgical center for her complex cardiac care.
The Spurlock’s journey with CHD started with a series of doctor’s appointments while his mother, Nicole, was still pregnant. She and her husband, Walter, were told “something was wrong” with their baby’s heart by her OBGYN in Amarillo, TX (more than 600 miles away from Houston). That 20-week appointment led to specialists in Lubbock, then eventually, relocation to Houston at 36-weeks gestation.
After birth, Augie spent several days in the NICU, and was moved up to the CVICU (cardiovascular intensive care unit) on Christmas Day when his heart rate wouldn’t dip below 200 beats per minute. At 12 days old, Augie underwent his first heart surgery for placement of a BT shunt. It would be less than 24 hours before he was rushed back for his second.
December 29th was the hardest day the Spurlocks ever lived. They watched their baby almost die, a blood clot the likely culprit for his sudden and rapid decline in oxygenated blood. However, in what can only be described as divine intervention, Augie’s heart surgeon became available in the exact moment he was needed. His second attempt at the surgery was more strenuous, yet far more successful. Augie recovered remarkably fast and was released to the family’s Houston apartment 19 days later.
Because the BT-shunt is only considered a “bridge” to a more effective, long-term circulation for hearts on a single-ventricle path (only using one, main pumping chamber), Augie would need further surgeries. His next surgery, the Glenn, took place five months later. All went off without a hitch and he was released a week later.
In the following weeks, Augie’s team of doctors decided he was finally stable enough to leave Houston to go “home home.” His parents took him on a mini tour of Texas, making several stops, and allowing him to wake up in his home nursery for the first time at seven months old. He did have to return to Houston (but for only a short stay) to correct his malrotation of intestines.
It’s been over a year since Augie has been home on the farm and he absolutely loves it! The Spurlocks fly to Houston about every four months for checkups with his cardiologist. He will need intervention in the future and they aren’t sure whether the surgery will be a Fontan (completion of single-ventricle palliation), or a biventricular repair (an option that is unlikely but not out of the question). They are in the process of seeking a second opinion to ensure they are making the best choice possible.
With the help of family and friends, the Spurlocks have partially endowed a CHD research fellowship at Texas Children’s Hospital, in partnership with Baylor College of Medicine. The goal is to better collect and analyze CHD patient data to improve research, and ultimately, treatment.