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It’s what we keep on saying, "she can finally just be Nova now"

When little Nova decided to make her descent down to earth, she burrowed like a star into the midnight void of Amy’s womb - keeping much of her uniqueness hidden from the eyes of the ultrasound. It was only at her birth on the 17th of August 2018 that the Portman family discovered that their little girl had Down Syndrome and was soon after diagnosed with Ventricular Septal Defect (VSD) and Atrial Septal Defect (ASD), with a PDA that did not close after her arrival. “We were in a lot of shock!” shares Amy who absolutely adores their “little treasure”, “there were no signs of abnormalities throughout my pregnancy, so we did not know. We felt very overwhelmed” Soon after finding out, the Portman’s paediatrician made contact with Maboneng Heart and Lung Institute’s (Maboneng) paediatric cardiologist, Dr Jeff Harrisberg, “who came straight away to check Nova. From the beginning he was just so amazing,” says Amy, “we didn’t know what was happening. He comforted my husband - who was in tears - and just let him cry and hugged him which was so refreshing for us.” Dr Harrisberg reassured the Portman family, explained Nova’s condition and let them know that their new born baby would need open heart surgery to fix her heart… Nova was put onto medication for her heart and scheduled to go in for surgery with Cardiothoracic Surgeon, Dr Hendrick Mamorare when she was three months old. “We were all geared up and prepared... and then found out that she was not strong enough to go in for her surgery.” Her surgical team decided to go ahead with the ‘smaller’ segment of her op and did a pulmonary artery band to relieve pressure off of her lungs. “Nova was so swollen after her first surgery. It was terrible to see her like that...” One year and two months later, Nova returned to theatre under the guidance of Dr Mamorare once again, this time for her second op. Her surgical team had hoped for her to be 10 kgs to support her throughout her open heart surgery to tend to her VSD and ASD. Due to her heart condition she was unable to put on enough weight and it was decided that a 7 kg Nova would suffice. The Maboneng team removed the PA band (put in during her first op) and rectified her VSD and ASD. “Waiting during the op is scary - basically you just hold your breath and pray. Dr Mamorare is so warm and knowledgeable and easy to trust… we trusted them wholeheartedly and knew that they knew exactly what they were doing. Our good relationship with Dr Harrisberg, Dr Mamorare and the rest of the team made it so much easier,” shares Amy, “Dr Harrisberg’s receptionist, Grace, and Mrs Harrisberg have also always been so amazing to our family with their kindness at each and every appointment over the years.” After their first post-op experience, the Portman’s had expected the worst when they finally got to see their little girl after her four hour op, “we were prepared for the worst, but she had none of the swelling” and was only in CTICU for four days. “She had her surgery on Tuesday and by Friday was already sitting up. On Saturday, during his CTICU round, Dr Mamorare said to us, “I think she is bored - she needs to go home and get some stimulation”. We took her home that Saturday and had no idea what to expect. She pointed to the couch and pulled herself up which she had never done before the op. We were in shock! It was an absolute miracle,” says Amy, “she can finally just be Nova. It’s what we keep on saying, she can just be Nova now.” Little Nova is now in a playgroup, loves playing with friends and is able to communicate without speech. She attends Physio-, Speech- and Occupational Therapy for her Down Syndrome. “She is like a regular two year old now, just running around and her scar is healing so nicely.” “I feel like the Maboneng Drs and Nurses do so much and I don’t even have a photo of them… it’s just not what you’re thinking about at the time. I always think to myself, how do you even thank them? Nothing you say or buy can ever thank them for saving your child's life, and I know that they are not there for recognition. Also it was amazing to see how there are three surgeons who all help each other… they each know about all of the cases. When it’s their turn to do rounds, they are aware of every single person’s case, even if they are not the head of that case... I remember Dr Myburgh coming to check on Nova, and I asked where Dr Mamorare was, which is when the Nurse informed me not to worry, as they all know about each other's cases and patients. I really felt that for them it wasn’t just a job… you can sense it is their lifestyle. We are eternally grateful.”

You can follow this gorgeous little warrior's story on her Instagram page created by Amy: @knowing_nova.


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