LVNC diagnosis and a heart-warming future

Hope for future pregnancy restored for mother of two following diagnosis

When Baytown mom Nikki Johns shares the story of her faith, her family, and the Texas Children’s physicians who saved her life, she can hardly control her emotions. Sadness, anxiety, laughter, and celebration — Nikki’s heart-warming story has it all.

In 2019, the now 29-year-old mother was pregnant with her second child. It was during this pregnancy that she was diagnosed with left ventricular non-compaction (LVNC), an extremely rare congenital heart condition. LVNC is a genetic heart condition where the muscle of the left ventricle of the heart doesn’t develop properly.

The diagnosis was a surprise after enjoying an uncomplicated pregnancy with her oldest son, Kaden, seven years earlier.

“My mother-in-law was a midwife at Women’s Specialists of Houston inside the Pavilion for Women,” Nikki said. “During my first pre-natal check-up she listened to my heart and noticed the extreme irregularity. She said it was the worst heart she’d ever heard. She immediately helped me find the right doctors.”

Worse before better

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Together, Dr. Angeline Opina Gonzalez, pediatric cardiology and adult congenital heart disease specialist, and Dr. Manisha Gandhi, OBGYN and maternal-fetal medicine specialist, worked on a treatment plan for Nikki. The plan included frequent visits, echocardiograms, anatomy scans and a medication regimen. With Drs. Opina and Gandhi’s help, Nikki went full-term and delivered at 39 weeks.

But her heart took a toll.

“The condition of my heart was worse after I had my baby,” Nikki said. “Dr. Opina and Dr. Gandhi kept increasing my medication and watching me closer and closer. On top of that, when I took Kaden in for his sixth-week appointment, doctors discovered that his aorta was slightly enlarged. A year later, there was the same discovery for my oldest son, Karter.”

Nikki had braced herself for the possibility of her children being affected since LVNC is genetic, but she said it was still challenging to hear that they, too, could possibly face complications with their hearts. The boys now see a specialist and are monitored every two years.

Heartbreak

From 2020 to 2022, Nikki’s own heart continued to decline. So much so, that in October of 2022 Drs. Opina and Gandhi came together for a serious conversation with her. “They sat me down. They told me that my risks were so high that they recommended that I don’t have another baby. My heart just wasn’t strong enough to handle it.”

It was a devastating blow for the young mother who’d just experienced the loss of a pregnancy a few months before. It was the last thing she wanted to hear.

Dr. Opina said the news was delivered with the seriousness the situation demanded.

“It’s important to understand what the heart goes through during pregnancy. When you are pregnant, the amount of blood that your heart has to pump increases, so in the case of patients with heart failure; the heart may not be strong enough to pump for both mom and baby, and if the heart doesn’t pump correctly it can’t support the growth of the baby.”

Change of heart

Nikki said that over the next six months, she worked on exercising, taking her medications, and increasing her prayer life regarding her health. “Before I went into my April 2023 appointment, I told God that I just didn’t want my heart to be worse. The next morning I woke up and changed my prayer to be more positive.”

Instead of praying for the maintenance of her current condition … “I said God, please heal my heart.”

And it was at that April appointment that everything changed. Nikki said that Dr. Opina looked at her chart and couldn’t believe what she saw. Although the LVNC diagnosis was still in place, her heart function had significantly improved.

“I told Nikki to give it six months and if her heart still looked this great, she could consider having another child,” Dr. Opina said. “We talked about the potential risk with another pregnancy, but with the changes seen in her heart it was finally a possibility.”

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By October of 2023, Nikki’s heart looked even better and for the first time in years, she was healthy enough to pass her stress test. She and her husband, Andy, were overjoyed. They aren’t yet sure if they will try for baby number three, but they are delighted that they have the option to.

“I tell my patients all of the time that if they have a positive mindset the body will follow, which is why prayer truly does work,” Dr. Opina said. “When you add following your prescribed treatment program, taking your medications, exercising and eating right, the heart can make some miraculous changes.”

Dr. Opina reiterated that Nikki still has LVNC but her heart function has now normalized.

“As long as she has the proper medical team caring for her throughout her pregnancy, she can now have a baby if she wants to — and that’s why I do what I do.”