CDH UK - The CDH support charity

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Losing your baby

Sadly, some babies lungs are just not compatible with life, which means that no matter how hard the Doctors try to stabilise baby, all the signs indicate that baby is extremely poorly and that his or her lungs just can’t cope. This is often referred to as respiratory failure and is usually a result of severe lung Hypoplasia (under-development of the lungs).

Sometimes, there are other factors such as heart failure, deterioration during the operation or other complications.

The Doctors and nurses will explain why baby is deteriorating and will discuss with you what course of treatment can be carried out to attempt to try and improve baby’s condition and what options are available. Unfortunately, there can come a time when the Doctors feel that it is in the baby’s best interest to cease treatment. This is never an easy decision for parents or medical professionals to undertake and you will be given as much time and support as you need to make your decision.

Some parents find that baby lets them know when the time arrives, as the parents can see that baby is struggling. At this point you may feel that you want all of your family and friends who haven’t yet had the chance to meet your newborn to visit the hospital.

The NICU staff will try and fulfil all of your requests with regards to visitors if baby deteriorates, but remember that most of these units have strict visitor policies and they have to consider the needs of the other babies and their parents, so it is not always possible to accommodate all of your visitors.

It is a good idea to take lots of pictures and videos of your baby and usually the nurses will do this too, as well as keep a little diary of baby’s day to day care for you to take home. You may also be offered a parents room on the unit, so that you can be close to baby at all times. It can also be arranged for you to have baby baptised on the unit and the nurses will be very supportive in helping you make these arrangements.

When the time comes to remove baby from the ventilator, you can choose to be present or to wait for the nurses to bring baby to you. This may be the first time you and your partner have actually held your baby and this alone can be extremely overwhelming. You are encouraged to bathe and dress baby and to hold them and talk to them for as long as possible.

You may also wish to take some footprints or handprints of baby and some photographs.

The hospital usually give you a ‘memory box’, containing things like baby’s blanket from their cot, heart monitor pads, diary and photographs and also useful information such as how to register baby, support group information and funeral arrangements.

Everyone reacts differently in this situation and there is no right or wrong way of dealing with emotions or feelings. You may find it useful speaking to a hospital counsellor or hospital chaplain if they are available. Family and friends are also invaluable at this difficult time.