My son Scott Harmse was born on the 14th September 2016, he was blue when he was born they had to take him to NNICU had him on oxygen for a few days, they did blood test to see what the problem was they said he had an infection. Days went by they could still not tell me why my sons oxygen levels went down to 60% on some days on the 25th September 2016 they called the cardiologist to come see my son that’s when they diagnosed him with CHD – he has Tetralogy of Fallot, (with large Ventricular septal defect) I cried when they told me that, no parent wants to hear that, but I was relieved at the same time so they now could treat him for the right diagnoses. He was discharged on the 1st October 2016, I was happy and nervous at the same time we had his monitor and Oxygen machine at home to monitor his oxygen levels. He goes for check-ups every 2 months. I also noticed that his left eye looked different than the other eye and it was bothering me. as a mother you can feel if there is something wrong, we took him to two different Opthomoligist they saw some abnormalities in the left eye they then send us to a Dr at Donald Gordon to do a G-Scan the results came back confirming he has Microphthalmia (it is a disorder in which one or both eyes (Eyeball) are abnormally small in his case just the left eye is Mircrophthalmia. They also said there looks like some bleeding behind the eye we should do more test. Scott got admitted on the 20th October to do blood test and on the 21st October we did an MRI at Bedford gardens – MRI results confirms he has no optic nerve on the left eye – he would not be able to see out of the left eye, the right eye looks perfect we thank God that he has vision in the 1 eye. He is 5 months he is a little delayed with his milestones it could be because of his vision or his lack of oxygen we not sure I am planning to see a Paediatric Neurologist just to do a full check-up. We want to send him to OT and Physiotherapist to help him improve with his milestones. We as people wake up not being grateful for the small things we have we might moan about some things but there are other people battling more than us, I thank God I wake up every morning being healthy and that I can see, I don’t know why my little boy this small must suffer and have all these things wrong with him but I know God has a reason for all of this. I thank God for blessing me with this little boy and I will do whatever I can to give my son the best life possible.
Scott went for his first surgery on the 30 January 2017 they wanted to do a full TOF repair but unfortunately his Pulmonary artery was to small when they opened up his chest they did a shunt for now and will come back in a few months for a full TOF repair. He is in pain but doing great.
His name is Scott and the meaning is WARRIOR – he is defiantly a warrior
You can also follow his Facebook page for updates it called Scott’s Journey
I would just like to thank everyone for your support and prayers 🙂
Many Thanks Desiree