There is no right way or wrong way to feel when your baby is diagnosed with CDH and the subsequent journey ahead of you. We are all individuals who cope with situations and emotions in different ways. CDH can also have a huge impact on your family and friends too. There will likely be life changing decisions to consider and make along the way and situations that you feel are overwhelming at the time, but we will help to support you through them. We have listed below some of the normal emotions that you, your family or even your friends may feel at some point

• Devastation
• Fear
• Anxiety
• Anger
• Blame
• Numbness
• Impatience
• Negativity
• Uselessness
• Neglect
• Guilt

You may also have other children who you are worried may be scared and upset by having a poorly sibling and you may also worry they may feel neglected because of your time spent with your new baby and this is normal.

Children are surprisingly adaptive to situations and in most cases appreciate you telling them the truth. Knowing what is going on and explaining things in a way that is appropriate for their age helps them to feel reassured and stops them inventing things in their head. Sitting down and talking with them about why your baby is poorly can also help to prepare them for you staying at the hospital and not being at home and can also help to prepare them in case of any sad news.

Having family and friends on hand who can look after your other children, take them to school and on outings will be helpful and will serve as a distraction until you are with them.

Talking about your baby and how your baby is doing to your other children, taking them to hospital appointments, showing them pictures and videos of your baby and encouraging them to draw a picture or make something for the new arrival and visiting them (if possible) will help them to cope and understand what is happening and helps them become accustomed to a hospital environment. Involving children makes them feel supportive to you and that they are helping in some way.

CDH UK can offer you a range of support, from information and advice and child friendly drawings, to simply lending an ear. We can find other parents nearby who have experienced the same situation as you. We can help with costs such as travelling and parking known as our ‘Home to Hospital’ scheme and other financial help (see our ‘Need Help’ section) . We can also put you in touch with other organisations which can help (see useful contacts and websites).

Free professional bereavement counselling is also available by request (subject to conditions).