Leah was told that she wouldn’t be able to have any more children due to an endometrial ablation in 2013. So, it was a total shock to everyone when she became pregnant three years later. It was a complicated pregnancy from the start. However, Leah and her family were not prepared for the news that their 20-week ultrasound brought.
There, in the dark room with cold gel on her torso, Leah discovered her baby had Hypoplastic Left Heart Syndrome (HLHS) and a clubbed foot. “We were so devastated,” Leah remembered. Harper was born at 36 weeks by an emergency c-section due to signs of infection.
“We almost lost her on more than one occasion. This was hands down the hardest thing we have ever endured as a family.”
At 4 days old, Harper had her first open heart surgery – the Norwood and BT shunt a stage 1 surgery for HLHS. After two months in the hospital and many ups and downs, Harper got to go home for the first time. “We almost lost her on more than one occasion,” Leah said. “I have two other children and live an hour and a half away from Vanderbilt so this was hands down the hardest thing we have ever endured as a family.”
They were home nine days when Harper aspirated after vomiting. They ended up back at the hospital and stayed there for six more weeks. During those six weeks Harper underwent Nissan surgery, a gtube placement, a cardiac cath, and a stent placed in her shunt.
The Rhodes family went home for three weeks until they were back in the hospital for Harper’s Glenn – stage 2 surgery for HLHS. After month Harper was sent back home on supplemental oxygen for a short time. Harper is now 20 months old and walking, talking and eating by mouth. “We are so blessed with this sassy little nugget,” Leah said. “She is a joy to us all!”
Although Harper is currently thriving at home, there is no current cure for HLHS. There are only temporary fixes, another surgery, another heart cath, another cardiologist appointment. This is the reality for the families and people with a congenital heart disease. The fear of the unknown, the anxiety of what the future will bring. We need your help to find a cure. Help us defeat the disease that affects 1 in 100 babies by donating today to fund a cure.