Frequently Asked Questions

How long will my baby be in hospital?

The length of stay in hospital for infants with CDH is very variable. For infants with mild disease, who do not require mechanical ventilation before their surgery, they may be out of hospital by 2 weeks of age. However many babies with CDH require more support than that, and some have needed to be in hospital for as long as six months. The average length of stay is approximately five to six weeks.

Dr Rod Hunt, FRACP, MRCP(UK), MMed, PhD
Director, Department of Neonatal Medicine
The Royal Children’s Hospital, Melbourne
and Senior Research Fellow
Murdoch Children’s Research Institute

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Will my child need flu vaccinations each year?

This would be preferred. All children over the age of 6 months with chronic respiratory conditions are recommended to have an annual flu vaccination.

Professor Dominic A. Fitzgerald MBBS PhD FRACP
Paediatric Respiratory and Sleep Physician
Sydney Medical School, University of Sydney,
Senior Staff Specialist, The Children’s Hospital at Westmead, Sydney.

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If my baby is diagnosed with a linked co-existing chromosomal anomaly, will they still operate?

This would depend on the wishes of the parent, the nature of the chromosomal anomaly and any other associated anomalies. Chromosomal anomalies have been reported in up to 20% of babies with CDH, but do not appear to be a common feature of most series. The most frequent chromosomal anomalies are the trisomies, especially those of chromosome 21, 13 or 18, when each cell in the body has three copies of one chromosome rather than the normal two (one from each parent). Trisomy 21, often referred to as Down’s syndrome, would generally not be regarded as a contra-indication to surgery, although the baby would be more likely to have other anomalies which might impact of the timing and success of the surgery, especially an associated heart defect. In contrast, Trisomy 12 and 18 have a much less favourable long-term outcome, requiring careful discussion between the parents, surgical and medical team as to whether or not operative repair would be appropriate or in the best interests of the child and their family.

Andrew J. A. Holland
PhD FRCS FRACS FACS
Professor of Paediatric Surgery
Sydney Medical School
The University of Sydney

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Will my baby’s under developed lungs ever grow?

Both lungs are usually under-developed but will both grow over time. The lung on the side of the diaphragmatic hernia is more affected than the other side. However the lungs will never be as large or have as many air sacs within it compared to a baby who did not have a diaphragmatic hernia. This is why it is important to follow up with your doctor over time to monitor respiratory health and measure lung function in the school years.

Professor Dominic A. Fitzgerald MBBS PhD FRACP
Paediatric Respiratory and Sleep Physician
Sydney Medical School, University of Sydney,
Senior Staff Specialist, The Children’s Hospital at Westmead, Sydney

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What is ECMO?

ECMO stands for ExtraCorporeal Membrane Oxygenation -the blood is taken from the body and oxygenated in a machine before being returned to the body, taking the work of oxygenation away from the lungs. It has a number of potential adverse side effects including excessive bleeding, which in babies is a risk to the brain. It is used at RCH in Melbourne for babies with CDH – but only very rarely. At RCH in Melbourne we have a number of ventilation strategies, including high frequency oscillatory ventilation (HFOV) and high frequency jet ventilation, which allow us to avoid exposing these babies to the risks of ECMO.

Dr Rod Hunt, FRACP, MRCP(UK), MMed, PhD
Director, Department of Neonatal Medicine
The Royal Children’s Hospital, Melbourne
and Senior Research Fellow
Murdoch Children’s Research Institute

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Will my child get short of breath from playing simple games?

This may occur with strenuous exercise but is not universal. Children will often limit their participation in vigorous exercise and parents may observe this. For this reason it is important to discuss this with your doctors who may be able to monitor lung function, consider heart function and when older [8-10 years of age] may organise an exercise test to measure your child’s level of fitness.

Professor Dominic A. Fitzgerald MBBS PhD FRACP
Paediatric Respiratory and Sleep Physician
Sydney Medical School, University of Sydney,
Senior Staff Specialist, The Children’s Hospital at Westmead, Sydney

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Will the patch need to be replaced when my child gets older?

Whether or not a patch requires replacement depends on the original size of the defect and the material that has been used. In the past, only non-absorbable, prosthetic material was available, such as Gortex. As this did not grow with the child, recurrent herniation occurred in a third to half of all children, usually one or more years after the original repair and requiring re-operation. Over the last 10 to 15 years, biological materials such as Surgisis have more commonly been used. These materials, as they are slowly replaced by the body’s own tissue, should then grow with the child and thus would seem less likely to need replacement. Unfortunately, whilst this material has increasingly been used, the overall recurrence rates seem similar although this may have partly reflected earlier experience with this material.

Andrew J. A. Holland PhD FRCS FRACS FACS
Professor of Paediatric Surgery
Sydney Medical School
The University of Sydney

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Why do some babies ‘get over’ pulmonary hypertension and why do some babies die because of it?

The degree of pulmonary hypertension will vary and is usually worse in children with larger diaphragmatic hernias. Most children will have a degree of pulmonary hypertension before the operation but not all will need treatment before the operation in the first days of life. Some children may need medicine for continuing pulmonary hypertension during infancy.

Professor Dominic A. Fitzgerald MBBS PhD FRACP
Paediatric Respiratory and Sleep Physician
Sydney Medical School, University of Sydney,
Senior Staff Specialist, The Children’s Hospital at Westmead, Sydney

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What’s the statistics of CDH children having a twin?

Data suggests that there is an increased risk of CDH occurring in twin births. The WA Register of Developmental Anomalies – WARDA (previously called the WA Birth Defects Registry) records data from 1980-2013 of births where a baby has an anomaly. The rate of CDH in multiple births (all twins) shows 10.49 per 10,000 multiple births and 4.09 per 10,000 singleton cases of CDH

Dr Carol Bower | Head
Western Australian Register of Developmental Anomalies
King Edward Memorial Hospital

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