Featured cherub of the week is CDH survivor Hugo Kesek, the son of Matthew and Jessica Kesek and twin brother to Theo. Matthew and Jessica are CDH International’s United Kingdom Ambassadors. Matthew and Jessica had this to share about Hugo:
“Our twin boys Hugo and Theo were born on 15 March 2018. Around the 16th week of the pregnancy we found out that Hugo, known as Twin 1 at the time, had a left sided diaphragmatic hernia. We were told that if he survived the pregnancy that he had a 50 / 50 chance of survival. We were completely devastated, neither of us had ever heard of CDH and although he would be scanned regularly, until he was born we wouldn’t know the true extent of his condition. Due to further complications with the pregnancy Hugo and Theo were delivered seven weeks premature by C-Section. At birth Hugo was intubated and transferred to NICU – our first memories of Hugo are of him in his incubator covered in tubes and wires and although it was hard to see, we were just so relieved that he had got to this point. Hugo responded well to the ventilation and was stable enough that at four days old, the consultants were happy for Hugo to undergo surgery to repair the hernia. Following the operation, we found out that his hernia had been quite large with his stomach, bowel, spleen and part of his liver in his chest. Despite the size, the repair hadn’t needed a patch. Two days after his surgery Hugo suffered a pulmonary hemorrhage and required increased ventilation and a blood transfusion. However, despite this set back, he recovered and was extubated 6 days later – the next day we finally got to cuddle Hugo. After a further 15 days in intensive care he was well enough to be promoted to the high dependency unit and a further 9 days later he was finally reunited with his brother Theo in the Special Care Unit. By now he was still on High Flow oxygen and being fed via an NG tube but was doing better that we could have ever expected. Just over two weeks later, having spent seven weeks in hospital, Hugo was discharged home.
Hugo is now one year old and although his hernia was repaired the physical effects of his CDH are still becoming apparent. Since birth he has suffered with reflux which is still on going and he has been slow to gain weight. At six months old he was rushed to A&E with vomiting and ended up needing surgery to correct a partial bowel obstruction caused by scar tissue as a result of his hernia repair and more recently he has developed a curve in his spine.
Despite everything he has been through we know how lucky we are that Hugo survived and although he has a few obstacles still to overcome, we know he will do so with a smile.”