Cataleya’s Journey with CHD

Cataleya is translated to mean beautiful flower. The first flower to bloom in her mother, Lorraine’s garden. “A gift given from God,” says Lorraine, emotional and overwhelmed as she reflects on her and her daughter’s CHD journey.

Cataleya arrived on the 4th of April 2016 and it was only at a check-up four months after her birth that her paediatrician picked up a heart murmur. The Umlaw family were referred for a cath scan, and after that, Cataleya was reffered to Dr Jeff Harrisberg, where she was diagnosed with VSD (ventricular septal defect). “I arrived at Dr Harrisberg feeling very emotional and confused,” recalls Lorraine, who’s mind was on a constant repeat of “at this age (40 years), I cannot afford to not have this child”.

“Dr Harrisberg explained everything on paper and with drawing. It was easy to understand; it made sense, but it seemed impossible to imagine him overcoming it.” It was through Dr Harrisberg that Lorraine was introduced to “the extra, super nice” Dr Erich Schürmann. She recalls asking Dr Schürmann why he made it sound so easy, “he said to me: ‘it’s not easy, but it’s possible.’” The ease with which Lorraine experienced Dr Harrisberg and Dr Schürmann on each of her visits helped her to gain strength, wisdom and hope, “everytime we visited Dr Harrisberg, it was like I was building my self-esteem” and it helped to increase the confidence Lorraine had in her daughter’s surgical team. “Everything was so seamless. Everything was always explained to me until I understood. You get the feeling like each doctor and surgeon really knows what they are doing – it makes you feel at ease.”

At four months old, Lorraine’s ‘beautiful flower’ underwent a pulmonary artery banding, to prevent an excess of blood flow to the lungs. “I was devastated about the op,” shares Lorraine, “I was imagining them cutting my small baby; I was imagining the pain my baby would go through”. At the time of her first operation during which her blood flow was put under control, little Cataleya’s VSD hole was big, yet not visible, and so the team collectively decided to delay the full repair.

Lorraine confides that she experienced immense stress, anxiety, heart palpitations and depression as she weathered the waves of her daughter’s CHD journey and the challenges that came along with it.

On the 22nd of July of this year, at four years old, Cataleya underwent her second heart operation – this time to close her VSD and to remove her pulmonary bands. “2020 has been a difficult year for many, but for me, it is a blessing. Cataleya was discharged on the 25th of July. I stopped giving her painkillers on the 30th and today, she is up and running around, only two weeks out of ICU. It is by the grace of God – God decided that now is the time I will wipe your tears. I owe them a lot… I owe them so much”.

“The whole [Maboneng] team made my experience. It was so tough and they made it great. I am really touched and I am astonished. I don’t know where these doctors and surgeons come from, but it is not from this planet. They are a gift from God. Their attitude is our of this world, and more than anything, I felt and really feel the humbleness of Drs Schürmann, Harrisberg and Naidoo. From my heart, I am just so grateful.”

“I will need to see them to really express my gratitude. They don’t understand – they think it is just normal because they do it all the time, but they really touched my heart and my life in a tremendous way. It is a miracle. May they be blessed with long lives, with more gratitude and may their family be blessed.”

To honor Cataleya’s journey and the pain she endured, Lorraine will be getting a tattoo of her heart warrior’s name. “I want to take the pain she has been through and make it my own.”