Laila's story: Limitless despite differences

Before Laila was born, her biological mother went in for a routine ultrasound. During this ultrasound, it was discovered that Laila had several birth defects. Laila’s biological mother called her parents, Joseph and Elizabeth Bernard, to let them know she was pregnant with their grandbaby. After a moment of sheer joy, Laila’s biological mother told them the news of her ultrasound.

Recalling the moment, Elizabeth said, “I had my daughter on speakerphone and my husband was across the room listening to the conversation. She told me ‘Mom, I’m pregnant.’ And I got all excited and she said ‘Don’t get too excited, we aren’t going to be able to keep her. We are going to have to give her up for adoption.’ I said, ‘Please don’t, we will take her’ and Joseph nodded his head yes and that was it.” Joseph chimed in, “Neither one of us discussed it with each other. We said, ‘We are going to take her.”

Although Laila would have a complex and lengthy medical journey ahead of her, Joseph and Elizabeth had no question about raising their grandbaby as their own. “We had the mindset that however she was born, she was going to be loved,” said Joseph. 

Laila was born in Oklahoma on March 10, 2020, during the peak of the COVID-19 pandemic. Elizabeth and Darrel made their way from Opelousas, Louisiana all the way to Oklahoma only to be told the hospital was on lockdown and they would not be able to go inside for Laila’s birth.

When Laila was born, her birth defects were far more vast and complex than they had been told from the prenatal ultrasounds. Laila’s esophagus was not attached to her stomach, her anus had no opening, she had four heart problems including an aortic arch, as well as several other birth defects.

At just one day old, Laila had a G-Tube, a tube inserted through the belly that brings nutrition directly to the stomach, placed and an ostomy, a life-saving procedure that allows bodily waste to pass through a surgically created stoma on the abdomen into a prosthetic known as a ‘pouch’ or ‘ostomy bag’ on the outside of the body or an internal surgically created pouch for continent diversion surgeries.

Due to COVID-19, many surgeries that Laila needed were considered “elective surgeries” because they were not lifesaving surgeries. She had surgery to fix her esophagus and the surgery caused a leak and chest tubes had to be placed.

For five weeks, Elizabeth and Joseph stayed in Oklahoma unable to visit their new baby girl in the Neonatal Intensive Care UNIT (NICU) due to COVID-19 hospital restrictions. The hospital put up a monitor for them to watch Laila throughout the days and nights and filled them in with all updates in her health journey.

Three months and three days later, they were able to bring Laila home to Opelousas. The day after Laila left the hospital, the physician that performed the surgery in Oklahoma called Joseph and told him about a pediatric surgeon at Children’s Hospital New Orleans that he felt was the top-notch doctor in the region, Dr. David Yu.

Before Laila was even born, Joseph had contacted Children’s Hospital New Orleans pediatric nephrologist, Dr. Ihor Yosypiv, who had been his youngest son’s nephrologist as a child, to let him know his soon to be granddaughter would be born with only one kidney. Dr. Yosypiv told Joseph to get a referral when Laila was born, and he would be happy to care for her.

Elizabeth and Joseph were able to get Laila a referral to Children’s Hospital New Orleans through their family doctor they had seen for over 20 years. She felt Children’s Hospital New Orleans was exactly where Laila needed to be, and all the chips fell into place.

Elizabeth and Joseph laughed as they recalled walking into Children’s Hospital New Orleans feeling like new and young mom and dads. “It was amazing. We fell in love and every day we fall more and more in love with her,” said Joseph.

The care team at Children’s Hospital New Orleans worked together across several specialties to ensure that Laila would receive all her care here, at one hospital. Together the teams discovered other birth defects during tests they ran that had gone undetected and connected the family with the doctors that could help.

After discovering that Laila also had Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome, a rare congenital disorder that affects the female reproductive system, Dr. Yu and pediatric urologist, Dr. Aaron Martin, operated on Laila together in a surgery that was the first of its kind at Children’s Hospital New Orleans. “When they did the surgery, they came out and told us ‘This is opening new paths for other children who may come in like this,’ said Elizabeth.

“They were actually very friendly and open. They worked with us and explained everything. At the same time they were doing this, they were helping us get other doctors to see about the other health issues she had,” said Elizabeth.

Dr. Yu, pediatric cardiologist Dr. Powell, Dr. Yosypiv, Dr. Martin, and all of their nurses made sure that Laila was taken care of and that Elizabeth and Joseph could get all of the help and information they needed.

Elizabeth remembered, “All of these things they were talking to us about were new to us. We didn’t know any medical terminology; we didn’t know the procedures. They talked to us and made us so comfortable.” Joseph also said, “They explained to us so we could understand it. It wasn’t just straight medical terminology. They were straightforward, but it was all in laymen’s terms so we could understand what was going on. And that is the whole hospital, the whole team is like that.”

Joseph and Elizabeth were scared and nervous about Laila’s complex medical journey ahead. But her care team at Children’s Hospital constantly reminded them that her birth defects are common, and Laila just happens to have all of them together. As parents, Joseph and Elizabeth feel blessed that Laila’s care team has been so thorough and detail oriented when it comes to her diagnosis.

Laila now receives speech therapy every other week at Children’s Hospital as well as coming to New Orleans most weeks for appointments. Because they are here so often to provide Laila with the best care possible, Elizabeth and Joseph have purchased a camper to stay in when in New Orleans.

Although Laila has many other surgeries ahead of her such as spinal and open-heart surgeries, she is advanced mentally for her age. Just shy of three years old and despite her birth defects, Laila knows her ABC’s, colors, shapes, and can count to 25. “Mentally, this child is excelling. But physically she has some setbacks. She is challenged, but she will challenge herself to try,” said Joseph.

If Joseph and Elizabeth could give another parent advice when going through a similar situation, they would say to look for positive support groups in your life. They encourage parents to trust their doctors. Elizabeth said, “The doctors at Children’s have not led us wrong yet, and we actually had one of them say, ‘Hey, we think this would help and we would like to try,’ and right there my husband and I would look at each other and say, ‘Do it,” because they have always given us the best recommendations.”

Because of her experiences with Laila and the knowledge she has gained from Children’s Hospital, Elizabeth felt compelled to serve on the Board of Directors for St. Landry Abilities, which is a group for special need children in St. Landry’s parish.

Elizabeth and Joseph make sure to put Laila first in all of their decisions, and take every challenge, one step at a time. Laila turns three this March, and despite her upcoming back surgery and physical challenges, she has been accepted into a karate class.

When reflecting on his daughter’s progress, Joseph said, “Do not believe there’s limits. Do not let your child be limited.”