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Sophia, my Princess of Hope

“I cannot believe it’s been a year already. Gosh... with all that we’ve been through one would think time would’ve dragged on as it was not the easiest of times emotionally. We have witnessed you endure so much in such a short space of time… but by the grace of God, we’ve made it!” Kim writes in an open letter to her youngest daughter, Sophia, on the eve of her first birthday. A year back in time, the Oosthuizen family were ready and eagerly awaiting the birth of their third daughter. A name had been collectively decided on by the family of four, and Kim and her husband, Ryan, had been through the labour drill twice before with their two older daughters. “Little did I know that it was a pregnancy that would change my life forever,” shares Kim. The Oosthuizen’s third pregnancy started off by singing to them - in the sacred enclosure of Kim’s gynaecologist’s room - the “sound of perfection,” says Kim as she speaks of the fetal heartbeat. “That sound gets me everytime.” Everything was always good: the baby was growing well and all test results came back A-for-away. After several false labour bouts and contractions, Sophia finally arrived a 3.9 kilogram baby girl. Prior experience told Kim that her third little princess appeared bluer than normal. “Nobody would say anything,” details Kim, “she was cleaned and taken to NNICU”. Later that day the family were informed of Sophia-Grace’s Down Syndrome. “Our gynae was very apologetic… I was morning the loss of a baby I was told was OK with no concerns.” Just when the Oosthuizen’s thought they couldn’t handle anymore, Sophia was diagnosed with a hole in her heart.

Kim was riddled with guilt as she lay alone beside Sophia on her first worldly night. “I cried myself to sleep. I questioned myself: was it me? Could I have prevented this?” Google entertained Kim’s fears as she researched the stages and intensity of Down Syndrome. “I cried, then I read on, then cried,” recalls Kim, “it went on until I fell asleep”. The following morning, Kim rose with the realisation that she had been “given a rare gift”. “I accepted with thanks and gratitude, but I asked for guidance and continuous strength for the days I might feel down and sad,” remembers Kim, “[Sophs] is here to bring peace, love, joy and understanding into our lives and the lives of others”. 2018 marked the start of Sophia’s testimony. She visited hospital every month from January through to April to check-in with her paediatric cardiologist, Dr Jeff Harrisberg, and at sevens months old, underwent two open heart surgeries performed by cardiothoracic surgeons, Dr Hendrick Mamorare and Dr Erich Schürmann of Maboneng Heart and Lung Institute, to surgically rectify the hole in her heart. This little princess of hope then endured a deadly stint of Respiratory Syncytial Virus (RS-virus) - a common cause of acute bronchitis in infants under two years of age - to have her heart related recovery time setback by six months. “Sophia has restored so much faith in our lives,” shares Kim as she reflects on the teachings that accompanied the birth of their youngest princess. The extra chromosome nestled in the making of Sophia reminds her family and those around her how precious the gift of life is and the importance of gratitude. “She gives me hope and courage to be the best mom for her and her two sisters. Without having uttered a word, Sophia teaches everyone around her how to love and pray for one another, making us all want to be better people.”

The Oosthuizen’s journey into the landscape of a heart warrior has reminded them of the love they are surrounded by, as a family, as well as of the power of support. “Our family sacrificed their time and readjusted their lives to accommodate us. They have been our ultimate support structure.” The family of five grew roots of a deep faith, and continue to honour the strength and hope this grounding has given them. “The Down syndrome Association would say Keep Calm its only an extra Chromosome. I am so honoured that I was chosen to be Sophia’s mommy. I have three little princesses”. Kim continues to use the Facebook page she created for Sophia as a platform to “extend our heartfelt gratitude to everyone who has walked this journey with us. Follow her journey of bravery: Sophia my princess of hope.


© Maboneng Heart and Lung Institute 2018 | Images: Sophia my Princess of Hope / Facebook Page

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