City to unite again for tiny warrior
DANIE VAN DER LITH DANIE.VANDERLITH@ACM.CO.ZA
ONCE more, the Kimberley community is preparing to come together for the OATSA Fun Run/ Walk, in collaboration with the Kimberley Harriers Running Club.
The event is scheduled for Saturday, April 20, at Diamantveld High School. The festivities will kick off at 9am, offering routes of 4.9 kilometres and 2 kilometres. Additionally, the Kids Nappy Dash, a delightful 30-metre sprint, will begin at 10am. Families are warmly invited to participate and there will be an assortment of food and entertainment stalls available on-site.
The event isn’t solely about fitness and fun; it's a heartwarming gesture of support for a very special little fighter, Estél von Molendorff.
Estél was born at Mediclinic Bloemfontein on June 20, 2023, and her journey began with adversity and courage right from the start.
During her mother’s 32nd week of pregnancy, Kimberley doctors made a startling discovery - there was an excess of amniotic fluid in the womb.
Initial tests ruled out pregnancy-related diabetes, but an ultrasound raised concerns. Estél's stomach appeared underdeveloped, raising suspicions of a possible issue with her oesophagus, although it couldn't be confirmed until her birth.
At 35 weeks, the doctors made the difficult decision to refer Estél and her mother from Kimberley to Bloemfontein. Kimberley lacked a paediatric surgeon, and this was a necessary step in the family's quest for answers.
During the 36th week, Estél made her grand entrance into the world via an emergency C-section. Remarkably, a mere two days after her birth, she underwent surgery to ascertain the nature of her oesophageal atresia, which was either be a “short gap” or a “long gap.”
In the case of a short gap, her oesophagus would require stretching, while a long gap would necessitate another surgery when Estél reached around six months of age to position her stomach behind her heart.
After an anxious 36-day stay in the neonatal ICU, Estél finally got to go home. However, her underdeveloped stomach necessitated a unique feeding schedule: 1ml of nourishment every three hours through a mickey (feeding tube) inserted into her stomach, with a tiny hole in her neck for saliva drainage.
Estél's family embarked on a journey to find answers and connect with others facing similar challenges.
The vast expanse of the internet yielded only scant information, given the exceptional rarity of this condition. However, their determined pursuit led them to a doctor in Cape Town, who had previously encountered a similar situation.
This caring physician introduced them to the OATSA organisation, which is dedicated to supporting families confronting similar circumstances.
Estél's aunt, Anél Victor, was deeply moved and decided to become more involved, ultimately joining OATSA as the Northern Cape ambassador.
In November 2023, Estel underwent a crucial medical evaluation with her doctor, ultimately receiving approval for a significant surgical procedure slated for January 2024.
The intervention, known as a gastric pull-up, involved the intricate replacement of the oesophagus with another organ - in Estel's case, her stomach.
During the operation, surgeons skillfully reconnected the remaining upper oesophagus to the stomach, effectively restoring her capacity to swallow and ensuring the smooth passage of food into her stomach.
On January 18, 2024, the operating theatre became Est l's stage as she underwent a marathon surgery lasting from 2.25pm to 5.50pm a meticulous procedure spanning three hours and 25 minutes.
Following the operation, Est l relied on a ventilator for three days, with her oxygen intake set at 21% until the sixth day. It wasn't until the seventh day that a significant milestone was achieved: the introduction of milk in a bottle.
This marked a poignant moment as Est l, after seven months, could once again partake in the simple act of drinking milk and swallowing like any ordinary infant. However, the journey to recovery was not without its challenges.
Initially, the transition proved arduous as Est l struggled with consuming more than 2ml of fluid through her mouth. But, perseverance prevailed. Seventeen days later, Est l triumphantly left the hospital's confines.
Though the road ahead still held hurdles, Est l slowly adapted, gradually increasing her milk intake until she met the recommended daily dosage of 800ml.
On March 1, during Est l's follow-up appointment with renowned surgeon Dr Esme Le Grange, a palpable sense of relief filled the air as the family witnessed Est l's remarkable progress.
This period had been an exceptionally trying time for them, navigating the complexities of medical challenges. However, amid the storm, they found solace and strength in the unwavering support and prayers extended by their loved ones, the compassionate community of the OATSA Whatsapp support group, and the dedicated members of the Kimberley Harriers.
Their journey, marked by perseverance and resilience, stands as a testament to the power of collective support during adversity.
"We extend our heartfelt gratitude to Dr JG Meyer, whose keen eye during my pregnancy led us to the medical team in Bloemfontein,"
said Estél's mother, Christél, while reflecting on their journey.
"Our deepest appreciation also goes to Dr SM Le Grange, whose surgical expertise brought hope to our family. The staff at Life Rosepark Hospital deserves special recognition for their unwavering support, especially during those challenging nights in the paediatric ICU.
“While our path ahead may still hold obstacles, with upcoming appointments and dietary challenges due to reflux, we remain hopeful. Estél's resilience assures us that, despite the hurdles, she will lead a fulfilling life.
“We also want to acknowledge Anel Victor, OATSA ambassador for the Northern Cape and Free State, whose dedication to raising awareness and supporting families like ours is invaluable."
With raising awareness in mind, Anél is organising the April 20 fun run in Kimberley, with the invaluable support of the Kimberley Harriers Running Club, which is hosting the event.
Donations collected during the event will go towards aiding families and patients facing similar challenges and spreading awareness about the programme.
Anyone interested in getting involved or learning more about the programme can contact Anél Victor at 076 088 5020 or visit OATSA'S website www.oatsa.co.za. There's also a Whatsapp support group at 072 864 3926 and a Facebook page https://www.facebook. com/groups/oatsa.
On behalf of OATSA, Anél extended her heartfelt gratitude to the wonderful people of Kimberley who will once again take part in the fun run/walk event.
The event aims not only to bring the community closer, but also seeks to shed light on a rare medical condition, uniting everyone in support of the brave little Estél and children like her.