Meet Baby Simone, so sweet and every bit the little fighter.
"She's already a Daddy's Girl," her mom, Monae Johnson, says.
The Johnsons will tell you she's also their miracle baby. Simone was born at Alegent Health Bergan Mercy Medical Center on April 12, 2011.
"At that point, I didn't care if it was a boy or a girl, I just wanted everything to be okay," recalls Monae.
Four months into the pregnancy, Monae noticed a rash that wouldn't go away; but it was more than a rash – it was a sign of something much more serious.
"They found out that the rash was caused by antibodies I had which are related to lupus and some other auto-immune diseases," she says.
And that spelled trouble, in the form of a congenital heart block, for baby Simone.
"They did an ultrasound and our little Simone's heart was only beating at 60 beats per minute in my womb," says Monae. It should have been closer to 150.
The Johnsons would need to see an expert who handles high risk pregnancies – and fast.
"By the time I saw her, it was already too far along," says Michael Barsoom, M.D., a maternal-fetal medicine specialist with Alegent Health Clinic and the director of Maternal Fetal Medicine for all of Alegent Health. "But I felt it was worthwhile to use steroids. So I gave her oral steroids and followed up a week later and the baby's heartbeat was in the 50s."
Not exactly what Dr. Barsoom was hoping for. So he tried a different approach – one that would keep baby Simone on track for a healthy arrival.
"I actually gave her medication that would hopefully stimulate the baby's heart rate and keep it in the 60s," he says. "And that worked. The following week it was in the 60s and pretty much stayed that way the whole time."
For the next five months, Dr. Barsoom closely monitored the baby's growth and heart through ultrasound. At 36 weeks, it was finally time for baby Simone to make a healthy appearance.
"When he held her up over the tarp after the delivery and said, ‘it's a girl,' I was so relieved," says Monae.
Simone may need a pacemaker one day. The small chambers of her heart are beating like they're supposed to, but they're not able to tell the large chambers when they're supposed to beat. Only time will tell. But for now, she's right where she's supposed to be – in her mother's arms. Thanks to parents who endured a physically and emotionally draining pregnancy and a doctor who specializes in tiny miracles.
"If we hadn't gone to Dr. Barsoom, we probably wouldn't have our little girl," says Monae.
"I will deliver hope when I feel it is there," explains Dr. Barsoom. "Simone had been a fighter the entire time, showing us every time we evaluated that she was going to continue to do well and because of that, I was able to deliver hope."