We knew antenatally through scans and testing that Roman would be born with Trisomy 21, AVSD heart defect and duodenal atresia. We knew that at birth he would need an operation to repair the duodenal atresia.
Roman was born via emergency section and transferred from NICU to a different hospital. At 1 day old Roman had his first surgery to repair DA.
Things were successful and we expected to be home within 3 weeks. As the days went by Roman started struggling, he was not tolerating feeds, vomiting green bile, swollen tummy and was becoming very poorly.
It was then we realised Roman's bowel had perforated and he needed an emergency operation at 1 week old, we nearly lost him. He contracted sepsis and septic fluid continued to build, as well as internal bleeds. He was in ICU for 3 weeks having weekly operations.
It was then the diagnosis of Hirschsprungs disease was given and Roman was given an ileostomy. Roman became TPN dependent with the additional struggle of heart failure. He required oxygen and was having multiple 'blue episodes' in a day.
Roman overall spent 8 months of his life in hospital. He had open heart surgery at 6 months old which was a success. We gradually built up his feeds and he came off TPN and is now fed via NG tube.
Roman is now nearly 2, he is home, still has an ileostomy and is NG pump fed with daily medications. He has global development delay due to being in hospital for so long but we are working hard to get him sitting up and mobile.
Our journey is far from over, Roman will need further surgeries in the future but we could not be anymore proud of how far he has come. Roman is our little warrior.