Local family struggling with rare birth defect

Published 12:00 am Saturday, January 18, 2014

By Monique Roth

LAPLACE – “I never knew there could be so much wrong with a beating heart.”

Trista Brazan tearfully spoke those words as she talked about her family’s journey over the course of the last month.

In just a few short weeks, anticipation and pure joy of a new baby’s arrival have been tempered with a jarring diagnosis that came only after Brazan’s intuition led her to ask questions to her doctor about her unborn baby’s heart.

Kenny and Trista Brazan of Vacherie have been married for seven years and have a 5-year-old daughter named Chloe. They always planned on having two children and were excited to find out in August 2013 that they were expecting another child.

On Dec. 16, Trista and Kenny visited the doctor’s office for their 20-week ultrasound. Traditionally known as the ultrasound that reveals a baby’s gender, Trista said she was excited to get another peek of her baby and find out the sex, but ultimately she just wanted to know that the baby was thriving.

Trista said they were concerned about the health of their unborn child because of devastating news that some of their friends had received at their own mid-term checkups and ultrasounds.

“There was a gush of relief seeing a beautiful beating heart,” Trista said, adding that her fears of anything being wrong quickly subsided when an active little baby was seen on the screen.

Even though everything looked fine, Trista decided to ask one more question. The conversation between Trista and her doctor that day during the ultrasound was something that Trista refers to as an act of God.

Trista asked her obstetrician if there was any way to check the heart of her baby for defects. Trista explained to her doctor that Chloe was born with several holes in her heart.

The holes in Chloe’s heart were detected at Chloe’s first pediatrician’s visit after she was born. Trista explained to the doctor that the holes were small and doctors monitor them, but the doctors don’t feel the holes will pose a threat to Chloe. Even so, Trista knew it would make her feel better to check on her baby’s heart.

Trista’s doctor scanned the baby’s heart as much as he could given the technology in his office and the scope that an ultrasound would allow but told Trista that it would be in her best interest to get better images from a maternal-fetal specialist. Later that same evening Trista and Kenny revealed to their families and Chloe that they would be adding a baby girl, Claire Adele, to their family.

On Dec. 27, Trista met with the maternal-fetal specialist. After extensive scanning of Claire’s heart, she was informed that Claire has a rare congenital heart defect called Hypoplastic Left Heart Syndrome, or HLHS.

The diagnosis means the left side of Claire’s heart is underdeveloped. Trista was told that while Claire would be born alive, and seemingly healthy, she would require a number of open-heart surgeries, treatments and medications throughout her life.

Trista was referred to a pediatric cardiologist and visited on Jan. 2. After additional scans, the cardiologist confirmed the diagnosis of HLHS and then proceeded to provide more detail regarding options.

The cardiologist said the left ventricle, aorta, and mitral valve — all parts of the left side of the heart — were not working. He explained that while the baby is in utero, the right side of the heart can pump blood to the whole body. But once the baby is born, the right side of the heart cannot do all of the work, and surgeries are needed.

The cardiologist presented the Brazans with two options.

Treatment was the first option and comes in the form of three open-heart procedures designed to make the heart operate with just the right side working.

The first surgery would occur no more than seven days after birth, the second surgery would take place when Claire is between four to six months old, and the third surgery would happen between two to three years old.

The cardiologist mentioned the survival rate after all three surgeries is 60 percent, with the first surgery being the riskiest.

The other option the cardiologist presented, given the severity of the diagnosis, was termination. Trista said so far in this journey that was the toughest thing to hear, and she never thought she would ever have to be a part of a conversation that included mention of terminating her child.

“It was not an option,” Trista said with tears in her eyes. “We will give her the life she deserves.”

Treatment options for people with HLHS have only been around since the 1980s. With the oldest survivors only in their late 20s, the Brazans know that the road ahead of them is somewhat uncharted. If the surgeries don’t work for Claire, or if there are any other complications, heart transplantation in an option. Before treatment options were available or HLHS was detected in utero, babies born with the condition lived only a few days and then died, all while seeming perfectly healthy, explained Kenny.

The Brazans have been actively seeking out treatment plans for Claire, as well as researching hospitals.

On Jan. 22 the couple will visit Texas Children’s Hospital in Houston, where they are leaning toward delivering Claire and having her surgeries take place.

The hospital is unfortunately out-of-network with Trista’s insurance, but the couple is determined to make the right choice for Claire regardless of any expenses they will incur.

Out-of-pocket fees that the couple will acquire for the surgeries are unknown at this time. Other than the treatments and surgeries for Claire, the Brazans will also have traveling, lodging, and other miscellaneous expenses.

The appointments on Wednesday will include a fetal echo, consultation with the cardiologist and genetic testing to detect any additional birth defects. The couple will also tour the facility, including the NICU, cardiovascular ICU, and patient rooms.

Trista is planning to arrive in Houston alone at the beginning of April. Kenny and Chloe will visit on weekends, and Claire will probably be delivered on the last week of April.

Depending on the timing of the first surgery and Claire’s progress, the Brazans say that she could come home as soon as one month old.

“I’m feeling hopeful in medical advances,” said Kenny.

He added that he feels fortunate there is something known that can help Claire.

Trista said she feels as though she’s doing well now with all of the distractions of planning and preparation, but she said as her due date gets closer and less is in her control, she knows she will feel “less and less OK.”

“My biggest fear, outside of Claire’s health, is how it will affect our family life, especially Chloe,” Trista said. “What we really need is prayers.”

Trista said Chloe is aware of Claire’s condition, and every morning Chloe kisses Trista’s belly and tells her baby sister how much she loves her.

Trista said Chloe routinely draws her baby sister pictures and that her older daughter has been a source of strength to their entire family.

“Faith like a child is an amazing thing to see,” said Trista.

To help the Brazans with their medical and travel expenses, go to any Louisiana Federal Credit Union branch and ask to make a donation to the Claire Brazan Heart Fund. Donations can also be mailed to P.O. Box 103, Vacherie, LA 70090, with checks payable to the Claire Brazan Heart Fund. You can also donate online at www.gofundme.com/clairebheart.