Our beautiful baby boy Jacob was born on the 17th February 2013 and this is our CDH journey. We were told at our 20 week scan in early October 2013 that there was a problem with our baby’s development, his stomach was too high. After attending a specialist clinic at St Mary’s Hospital in Manchester we were told the devastating news that our baby had a left sided Congenital Diaphragmatic Hernia (CDH). His diaphragm had not formed on the left side meaning his stomach and other internal organs had herniated into his chest cavity which would impede the development of his lungs. At this stage they gave Jacob a 40% chance of survival at birth. We decided to continue on and were supported by St Mary’s Hospital Fetal Medical Unit.
Jacob was born on Sunday 17th February 2013 at 8.03pm at St Mary’s Hospital, Manchester. He was immediately put on a ventilator, sedated and taken to the Neonatal Intensive Care Unit (NICU) for assessment. My husband Niall got to meet Jacob shortly after, I met my baby at 12 midnight. We were told that initial signs were good. They performed his repair to his diaphragm which included putting his internal organs back below the diaphragm when he was less than 48 hours old all the signs were good. At 2am on Saturday 23rd February we received the phone call that we were hoping we would never get. Jacobs blood gases were really low and we needed to go into the hospital to speak to the doctor. We were told that they were very concerned as he was retaining fluid in the void where his right lung should be and his body was not coping. We didn’t know at this stage which way our journey was going to go so we took the decision to have Jacob baptised at 6am on the Saturday morning. We were later told that he had gone into organ failure. Jacob came through the wobble and after 12 days they had weaned him off the ventilator. We got to finally hold our new baby for the first time.
After 35 days in St Mary’s NICU department he was transferred to Wythenshawe Hospital. He stayed in Wythenshawe Hospital until he was 47 days old and then we finally got to bring him home. Jacob has continued to go from strength to strength and although we don’t know the capacity of his right lung he is coping remarkably well. He has reflux which is extremely common in CDH babies and was probably caused by the handling of his internal organs. As he develops hopefully he will grow out of it. Jacob started nursery in early November 2013 when I returned to work and he is thoroughly enjoying it.
Our CDH journey continues and we have overcome so many obstacles and I am sure that we will face many more. Niall and I could not have gone through this journey and being as strong as we have as a couple without the continued support of our close family, friends and colleagues to whom we owe a lot.