Advice From Sean and Lani: Participate, Expect the Unexpected, and Practice Self-Care

Sean and Lani are the parents to Nina, an incredible five-year-old heart warrior with a single ventricle heart, hypoplastic right heart syndrome (HRHS), pulmonary atresia, tricuspid atresia, and MAPCAs. Nina has undergone the Norwood procedure/BT shunt at 8 days old, unifocalization for MAPCAs and shunt upsize at 6 months, Glenn shunt at 21 months, and Fontan at 4.5 years.

Watch for our next post with Nina!

Augie

From the Spurlock Family:

Augie Spurlock was born on December 16, 2016 at Texas Children’s Hospital. Diagnosed in-utero with a host of complex heart defects, a team of doctors and nurses were ready to administer PGE, a medicine that would help keep him alive until he had his first heart surgery. His CHD’s include: complete atrioventricular septal defect, pulmonary atresia, double-outlet right ventricle, and transposition of the great arteries. This combination of defects along with malrotated intestines and a missing spleen were caused by a rare condition known as heterotaxy syndrome with right atrial isomerism.

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.  

Photo Jun 12, 7 53 36 AM
Augie (6 months), in the CVICU after his Glenn surgery.

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.

1J8A3843

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.

Augie with TCH Drs
Dr. Heinle, Dr. Mery, the Spurlock Family, and Zach (the new CHD Research Fellow)

How Are Things Now? An Update From the Spurlocks