Our CDH Story

Hi all, as many of you already know at our 20 week ultrasound scan our baby was diagnosed with Congenital Diaphragmatic Hernia (CDH)

CDH is a rare condition where the baby's diaphragm is not fully formed. Instead, the diaphragm has a hole in it and organs then move out of place through the hole. In the case of our baby it has been diagnosed as a left sided diaphragmatic hernia and the stomach, small intestines and liver has migrated through the hole up into the chest preventing the lungs from growing and performing properly and the increase in pressure with everything in the babys chest has caused the heart to move.

Since receiving this news, we have been to London to meet specialist surgeons from Belgium and Greece and were told that we might have had to move to London for 5 months to deliver and operate on the baby, thankfully the surgeons in London advised we could be monitored and deliver our baby in the Royal Victoria Hospital in Belfast.

We have been attending a minimum of 2 appointments a week in Belfast and lately have been advised that at the delivery of the baby there will be 35 staff in theatre. We have a long road ahead and have been advised when our baby is delivered we will be in hospital for several weeks possibly months (there can be cases where it takes up to 6 months) the baby will be on life support and progress will all depend on how strong the baby is when it arrives. Once the surgeons are happy the baby is strong enough it will have to undergo a procedure to move all the organs to the correct place and then stitch up the diaphragm.

We are setting up this page to cover the cost of travel and loss of earnings between both us as we have been unable to work full time hours in the last 17 weeks with travelling to appointments between Belfast, London and Coleraine and with the advice given going forward we are unsure when Sean can return to work, both parents have to stay with the child as at any point critical decisions may need to be made until we are told the baby is stable and ready to go home.

If we receive more money than required any extra cash will be donated towards belfast NICU ward. (where our baby will be cared for)

We understand that people can be under financial pressure at this time of year but any donation contributed towards this will be greatly appreciated by us as we go through this difficult time.