Our journey started on the 18th of November when we found out we were pregnant. We had been trying for a while but unfortunately my mom was not doing very well, and I think that had a contributing factor.
But doing the pregnancy test thinking it would be negative we got the biggest surprise ever.
But on the 26th of December all went a bit south. We had a threatening miscarriage, and I was put on bed rest.
Then on the 4th of January after months of struggle I lost my mom but she at least she knew she would be a granny, and unfortunately from there I was in and out of hospital just trying to keep my baby safe. But on the 30th of April they told me that he would have to come out as I have a life-threatening infection which puts Nathan and I at very high risk. So here we are in level 5 lockdown, and I must give birth to a 26-week micro prem baby. We were so scared as they could not guarantee that he would live.
We had only 15 minutes each to see our little boy everyday as we had lockdown and that tore us even more. He went through jaundice; he went through a tummy that swelled and even had an operation at about 4 months to remove hernias. But through this all he started getting the name little fighter as he was surprising the drs with the strength he was showing through all this. He was on life support until 4 months old but remained on oxygen as his lungs were very undeveloped and he was still growing. He then started showing signs of seizures and they had to do a major EEG on him coz he was still too small and fragile to go for an MRI or CT scan. They could not find what was causing the seizures and they had to take a dangerous try to have a CT scan of the brain on this little boy in that cold room with manual oxygen but with the awesome Dr Makate and nurses they pulled it off. That was a horrible day for us as we were told that he has a very premature brain and they have found PVL – What is PVL? PVL is a type of brain injury commonly found in babies who are very premature and have a very low birth weight. It is damage to the white matter around the fluid-filled ventricles of the brain. White matter transmits messages between different nerve cells and parts of the brain.
It broke us.
He was in NICU for a whole 5 months as the Drs were trying their best to get him off the oxygen but was just not happening. Now he is 1 year old and still on oxygen. So, they have done a bronchoscopy and they did not really find much wrong so they think it might be that brain damage that they found when he was so small.
Nathan isn’t reaching his milestones like sitting and his left side especially his hand there isn’t much usage so the paediatrician is suspecting that he might have Cerebral Palsy and thinks he definitely might have brain damage but the only way they can determine that is with a MRI and unfortunately with all the funds he has used the medical aid has said that they won’t be paying fully on the MRI and with covid and me not being able to go back to work as Nathan is a full job we are financially unable to pay all the medical bills.
We are close to the total MRI which is R8000 but we trying to still get more for us for things like petrol as we live quite far from his hospital and then also, we need to get him to a neurologist therapy physio if they have found something. He also needs to go see physios which costs R900 each time as the medical also does not cover that.
He is really a very happy child and has inspired so many people as he always has a smile on his face, and he just seems to go through life with a positive attitude.
He has been through so much but still has it on him to be friendly and happy.
We just would like the best for him and would really like to know what the road is further.
The uncertainty is really getting our hopes down and we need to stay strong for that little one
If you would like to donate towards Nathans MRI scan please contact 0724649278