Call Us On Freephone 0800 731 6991

Possible outcomes and ongoing problems

The best possible outcome is if your baby continues to improve and is transferred to your local special care baby unit and eventually you are able to take your baby home. The length of time your baby will be in hospital can be anything from 6 weeks to over 12 months depending on whether your baby improves quickly or experiences complications. Once your baby is home you can expect to receive visits from outreach nurses and health visitors, who will help you with all aspects of your baby’s ongoing recovery and any ongoing issues. If all goes well your baby will have few or no lasting problems and will grow up to be a normal healthy adult. Here are some of the things your baby may experience as a consequence of CDH:

  • Feeding issues such as your baby being slow to breast or bottle feed which may affect growth and weight gain and in extreme cases; a failure to thrive. Occasionally a tube (NG tube) may need to be placed into your baby’s nose and down into their stomach to help with giving feeds and medication. Sometimes a tube is placed directly into the stomach or small intestines if a feeding tube is needed for a while.

  • Reflux  is where gastric acid rises from the stomach into the foodpipe (Oesophagus). This can be distressing for you and your baby, but can normally be treated with medication. In severe cases a procedure called a nissen fundoplication is carried out where the surgeon improves the natural barrier between the stomach and the foodpipe. This prevents the flow of acids from the stomach into the foodpipe and beyond, and strengthens the valve between the two, which stops acid from backing up into the oesophagus as easily.

  • Speech and developmental issues resulting from artificial ventilation and long periods of hospitalisation. Your child will normally be referred to a specialist and speech therapist to deal with these issues.

  • Physical problems can occur such as poor muscle tone (hypotonia), a curve in the spine (scoliosis), or even dips in the breast bone or other chest areas aren’t uncommon. These are usually monitored by specialists and rarely require surgical intervention. Sometimes a special vest type brace can help with curves in the spine. Most physical problems can be helped with physiotherapy.

  • Hearing loss can occur and nobody knows exactly why this happens. Again, baby will be monitored throughout childhood by an audiologist (Hearing specialist) with regards to his or her hearing.

  • Re-herniation is uncommon, but can be serious if it occurs. The signs that this may have happened are as follows:
    • baby or child is generally unwell
    • loss of appetite
    • abdominal discomfort, swelling, or hardening of the tummy area and/or pain
    • difficulty breathing, or strange breathing pattern or noise when breathing
    • vomiting (may contain bowel or brown coffee ground like contents) or diarrhoea

This is not an absolute list of symptoms and sometimes there is little or no signs and it is picked up during a routine check up. However this is rare and you would normally see some tell tale signs. Always trust your instinct as you know what is normal or abnormal for your child.

If you notice any of these signs contact your GP immediately or call an ambulance.