In a heartwarming story of resilience, Lorelai, a baby girl from East London, has defied the odds and returned home after a five-month battle for her life. Born with a heart defect called Pulmonary Atresia, her journey involved severe complications, including life-threatening infections and multiple surgeries.
Her mother, Dominique Lubbe, spoke to the Mthatha Express, detailing Lorelai’s tough journey back to health and the numerous setbacks they faced.“We were just preparing for the big surgery and not at all for the unexpected complications,” she recalled.
“Firstly, the Cardiothoracic Intensive Care Unit (CTICU) is where your baby goes post-surgery. Every time we walked down there, it felt like I was walking into Dante’s Inferno; not knowing what to expect.“Lorelai’s surgery was a success, but two days later, she contracted an infection called NEC (Necrotizing Enterocolitis). When you have major surgery, the blood goes to protect the major arteries, your brain, heart, and lungs, and forgets the rest of the body.
“Lorelai’s infection worsened, which led to her having to go back to the theater for them to remove tissue from her sternum, where they did the open-heart surgery.“Her chest was kept open for a week. Lorelai was ventilated for four weeks total. She also got an infection on her legs that started eating the flesh, so she went to the theater a total of three times.”
Lorelai had various treatments but was not responding to the medication.
Lubbe, along with her husband Morné, said that the visiting hours were extremely difficult as parents. “The worst was when we got a call at 05:00 one morning from the surgeon saying she’s bleeding out of her drains, and we are losing her. They managed to stabilise her. However, we weren’t allowed to ever see her outside of the very strict visiting hours.”
Lubbe expressed that at some point, she felt that they were not going to leave with their daughter. “I’ll be frank with you; I didn’t think she was going to make it. For the first time, I just said to God, I’m going to stop fighting and just surrender to you,” she said.
Then remarkably there was a turning point. The following day she started improving. A week later she was off the ventilator and onto a Continuous Positive Airway Pressure (CPAP) machine.
“They managed to get her chest closed up, she got fed breast milk for the first time since her surgery. When she was off the oxygen, I was able to hold her again,” said Lubbe.“It absolutely altered my brain chemistry. It was so much more special than the first time I held her. She was weak, and she had lost a lot of weight.”
Dominique expresses her gratitude to the BackaBuddy fundraising platform, noting the surprising statistic that one in every 100 babies is born with a heart defect, a condition that claims more children’s lives than all childhood cancers combinedThe Lubbe family is facing a myriad of medical co-payments.
“Lorelai’s legs were badly damaged and only a plastic surgeon could fix them. Unfortunately, the medical aid regards that as cosmetic. She also had daily X-rays done to see how her lungs are doing, and her Prostin medication that she was on for three months prior to the operation, is R25,000 per vial and she has one vial a day.”When Lorelai started recovering physically, she developed oral aversion. Lorelai was so traumatised by being intubated and extubated, that she didn’t want to eat or drink or have anything near her mouth.
“So, I requested for her to be transferred back home to East London, from Sunninghill Hospital in Johannesburg, where we can go back to the Life Beacon Bay hospital for rehabilitation,” she added.
“She was discharged on October 4. It was surreal. Walking out of the hospital with her. I still can’t believe it. Before it was like we had joint custody over her with the hospital. Now it’s different. She’s such a good baby, and so talkative. You’d never say that she’s been through so much.”
“Had it not been for the amazing doctors at Sunninghill, I would not have my baby.”
