Advice from Nina: A Five-Year-Old Heart Warrior’s Perspective

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:

Diagnosis (given at 20 weeks gestation):
Surgeries:
Norwood / BT shunt at 8 days
UnifocalizationUnifocalization for MAPCAs and shunt upsize at 6 months
Glenn shunt at 21 months
Fontan at 4.5 years
History:
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.

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

Leigh Ann

From Leigh Ann’s Mom:

We found out about Leigh Ann’s heart condition at her 20 week ultrasound. The doctor saw something was missing from her heart and told me not to worry, and that doctors could fix her. We were sent to Texas Children’s Hospital three days later for a fetal echo. That is where we found out she had HLHS (Hypoplastic Left Heart Syndrome). It was so foreign to me. I knew nothing about heart conditions, let alone HLHS. We spent the next few months mentally preparing ourselves, researching, attending multiple doctor appointments, and decorating her nursery hoping she would get to actually come home to it one day.

She was born a week early by c section because she was breach and went immediately to the CVICU (Cardiovascular Intensive Care Unit) at birth. On day seven, Dr. Fraser did her Norwood surgery. One week later she coded and we thought we lost her. She remained intubated for the next two weeks while doctors tried to figure out what happened. It is still unknown. She never got to the leave between surgeries because she continued to get NEC, which is basically when the intestines start to die due to lack of oxygen. So she lived on TPN until the Glenn surgery was done four months later on July 11th. Tell a mom you can’t feed her baby? That was the hardest thing for me.

39181570_1795358467238297_4278406782574919680_n

We remained in the ICU for two more months after because of her lung pressures and because she needed to be on Nitric oxide for several days. We also continued to battle reflux issues, so she received her GJ tube, which was a blessing in disguise. Her stomach just was not ready to be fed yet. A week before we discharged she had a cath done to coil collateral vessels that were stealing oxygen from her heart. Her oxygen saturation was immediately better and she was no longer a purple color; she was pink!

Edited Leigh Ann in hosptial bed

They discharged us from the ICU instead of the step down unit because the nurses knew Leigh Ann well and felt it was best they discharged her themselves. September 29th we got to go home! She has been home every day since, besides a 24 hour hospital stay over Christmas for the flu. She is almost 100 % fed by mouth now, but still has her tube for night feeds. She crawls, talks, and is happy as can be. She receives in-home nursing twenty-six hours a week and adores her nurse. She receives speech, physical, and occupational therapy twice a week as well. She came home on thirteen medications and now is down to four meds. It makes such a difference.

39211729_1795360463904764_669980212020117504_n

In September she will be having an elective cath to balloon open her arch and possibly coil more collateral vessels. They will also check her lung pressures as we near the Fontan procedure in a few years.

39040838_1795360807238063_4812266037737160704_n

How Are Things Now?