This is Sonny born in Sept 2007. Sonny was diagnosed with left sided CDH at my 20wk scan. After an amniocentesis confirmed that there was no other genetic problems, we were referred to Glasgow’s Queen Mother Maternity Hospital Fetal Medicine Dept. After a detailed ultrasound scan Sonny was given a 60% chance of survival at birth, depending on his overall condtion, and if he survived the birth he would spend around 3 months in hospital. Living through the next 4 months of pregnancy was a nightmare, not knowing, not being able to buy equipment and baby clothes in case I “jinxed” him, although I just “had” to pack something for him in my hospital bag, so I bought him a little lion teddy which has his hospital bracelet on! I had 2 further MRI scans as well as detailed ultrasounds and finally before Sonny was born, injections to mature his lungs. I had an arranged C-section to ensure all the staff that needed to be there were. Sonny was born on 27th September 2007 and immediatley intubated and sedated and taken to intensive care. He continued to do well, so much so that they were going to operate to repair his hernia when he was 48 hours old, but having never done it so early before, the surgeon decided to wait till the following day. Sonny had his stomach, intestines, large & small bowel, spleen and part of his colon removed from his chest, his blood pressure stabilised as soon as his bowel was taken away. Sonny’s hole was actually very small so didn’t required a patch. Sonny was on a ventilator for 1 week, he was taken off the ventilator and put onto c-pap for only a couple of days and then transferred into the nursery into a big boy cot! He had a slight “blip” in his heart rhythm, but after seeing the cardiologist, was told that it was nothing to be concerned about. He was discharged from Yorkhill at 3 weeks old. The doctors told me that they had never had a cdh baby be so straightforward and I was interviewed for research purposes about our whole cdh journey. Sonny continued to thrive at home, he was put onto gaviscon for reflux and had large vomits until he was around 2yrs old, he is also on laculose and senna to help with his bowels. At 9months old, he became very wheezy, so we rushed him to the doctor who put him on a nebulizer and he was taken to Stirling Royal, he was discharged that same day with inhalers, which he only really needs for hayfever and if he has a bad cold. Sonny is now a big healthy (cheeky)! 3 year old and I am so proud of my baby boy x
- 0800 731 6991
- committee@cdhuk.org.uk