Great Ormond Street Hospital for Children NHS Foundation Trust: Information for Families

Diaphragmatic hernia
This leaflet explains about diaphragmatic hernias, how they are treated and what to
expect when your child comes to Great Ormond Street Hospital (GOSH) for treatment.

What is a We do not know exactly what causes

diaphragmatic hernias. Doctors think that
diaphragmatic hernia? a number of factors can have an effect on
The diaphragm is a curved muscle that diaphragmatic hernia development.
separates the contents of the chest from the
They are very rare, occurring in one in
abdomen (tummy). Diaphragmatic hernias
around 2,500 babies. They are more common
occur when the diaphragm does not form
in boys than girls. Diaphragmatic hernias can
completely, leaving a hole. This usually
be associated with other problems, so the
happens early in pregnancy at around six to
doctors will examine your child closely to
eight weeks.
check if this is the case.

How is a diaphragmatic
Intestine
protruding hernia diagnosed?
through hole A diaphragmatic hernia can often be
in diaphragm
diagnosed by a routine ultrasound scan
during pregnancy. Otherwise, it is diagnosed
soon after birth when a baby shows signs of
breathing difficulties. A chest x-ray will show
which organs are in the chest area and how
much they are squashing the lungs. Blood
tests to show how much oxygen is contained
in the blood are also commonly used.

The hole can be on either side, but in most How is a diaphragmatic

children it is on the left side. You may hear
hernia repaired?
the term Bochdalek hernia, which is the
medical term for this type of diaphragmatic Diaphragmatic hernias are repaired in an
hernia. The hole in the diaphragm allows part operation under general anaesthetic. The
of the intestine (gut) to move into the chest, surgeons will only carry out the operation once
which can squash the lungs and can stop your baby’s breathing and heart are stable.
them developing properly before birth. Depending on your child’s size and how stable
Other abdominal organs can also move into they are, the operation will either be carried
the chest area, such as the liver, stomach and out using keyhole surgery or by traditional
spleen, squashing the lungs even more. open surgery. Your surgeon will tell you which
approach is more likely, but there is a chance
that they may need to switch from keyhole to
open surgery once the operation has started.

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 Are there any alternatives? Sometimes, the surgeon may need to use
a ‘patch’ of special material to close this
Not really, no. Diaphragmatic hernias inevitably
hole. If your child’s intestine has become
require treatment, because if they are not
twisted while it is in the chest (which is not
repaired your baby’s breathing problems would
uncommon), the surgeon will correct this
get worse as they grow. Feeding problems
during the same operation. If the intestine
would also get worse with time.
has been damaged by being squashed in the
chest, the surgeon may remove a damaged
What happens portion. This will not usually cause your baby
any long-term problems unless a large portion
before the operation?
has to be removed.
Your baby will be admitted to GOSH soon
after birth. To begin with, they will be nursed
in an incubator and will have a tube passed Are there any risks?
through their nose into their stomach (naso- All operations carry a small risk of bleeding,
gastric tube or NG tube). This will release any during or afterwards. There is a chance that
excess air that is in the stomach and intestine, the intestines or other abdominal organs could
which also relieves the pressure on the lungs. be damaged when they are moved back into
They will also have a ‘drip’ (intravenous the abdomen but this is very rare. If damage
infusion) to give fluids and medicines directly occurs, this can be fixed in the same operation.
into their bloodstream. There is a small risk of infection but this is
A machine will be used to help your baby to minimised by giving your child antibiotics
breathe before the operation. In most cases, before the operation.
this will be a ventilator or an oscillator. If After treatment, there is a chance that the
your baby has problems with ventilation, hole in the diaphragm could come back,
they may be referred for extra-corporeal which would require another operation to
membrane oxygenation (ECMO) support. repair it. This risk is higher if your child has
The ECMO machine is similar to a heart-lung needed a patch repair.
bypass machine using during open-heart
Every anaesthetic carries a risk of complications,
surgery. It gives your child’s body a chance
but this is very small. Your child’s anaesthetist
to rest his or her heart and lungs for a short
is a very experienced doctor who is trained to
while. The doctors will explain all about
deal with any complications.
ECMO if it is needed and you can also read
our booklet on ECMO. The surgeons will only
operate to repair the hernia when your child What happens afterwards?
is stable on ventilation.
Your baby will come back to the ward to
The surgeon will explain about the operation recover, and you will be able to visit as soon
in more detail, discuss any worries you may as they are settled. For a while after the
have and ask you to sign a consent form operation, your baby will need help with
giving permission for your child to have the breathing so will be connected to a ventilator.
operation. An anaesthetist will also visit you All babies are closely monitored after the
to explain about the anaesthetic. operation, and so your baby will be connected
to monitors to check his or her breathing,
heart rate and oxygen levels. They will also be
What does the given pain relief through a ‘drip’. Occasionally
operation involve? there may be a tube from the operation site
During the operation, the surgeon will move (chest drain) to drain off air and fluid so that
your child’s intestine back into the abdomen the lungs have room to expand. This will be
and repair the hole in their diaphragm. removed as soon as it is no longer needed.

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 Your child’s lungs may not have developed of diaphragmatic hernia by studying these
properly by being squashed by the intestines children closely. However, there are a couple
in the chest. The length of time that your of side-effects which you should know about,
baby needs the ventilator depends on the should they arise in the future.
condition of their lungs. If this is likely to Sometimes it takes a while for your baby’s
cause long term problems, the doctor will intestine to work properly, so your child may
explain all about it to you. need extra nutrition. This will enable your
While your baby’s intestines recover and child to gain weight to reach the right size
start to work, they may be fed through and weight for their age. Please speak to the
a tube into their veins (total parenteral dieticians about this.
nutrition or TPN). This will gradually be Some children who have had a diaphragmatic
replaced by breast or bottled milk given hernia develop a problem with gastro-
through the naso-gastric tube when your oesophageal reflux when they are older. This
baby is ready for this. As your baby recovers, is where the contents of the stomach flow
you will be able to feed them from the back up the oesophagus (gullet) causing
breast or bottle. Over time, the drips and pain and irritation. For more information
monitors will be removed one by one. about this, please read our leaflet Gastro-
The nurses on the ward will encourage you oesophageal reflux: information for families.
to look after your baby as much as you feel A small number of children continue to have
able while they are recovering. This can lung problems so need to have oxygen or
be daunting, especially while your baby is medications to help them breathe. Children
connected to drips and monitors, but it will may also seem to be ‘behind’ in their
become easier with time. If you are worried developmental milestones, which means that
about caring for your baby, please talk to the they sit, walk and talk later than other children
nurses. their own age. Many children catch up in the
You will be transferred to another ward end and have few long term problems.
within GOSH or to your local hospital once
your baby is feeding properly and gaining
weight. We will send you a letter with details Support groups
of your outpatient appointment soon after The support organisation for families of
your child leaves the hospital. children affected by diaphragmatic hernia is
CDH UK. Call their free helpline on 0800 731
6991 or visit their website at www.cdhuk.co.uk
What is the outlook
for children with You should call your local hospital
diaphragmatic hernias? if your baby:
This depends on how quickly the condition „„ vomits when feeding
is diagnosed and how much the lungs „„ has a swollen stomach
were damaged before birth. The outlook is „„ vomits green liquid
improving all the time, as better treatment
„„ is not gaining weight
is developed. Children who would previously
have not survived are now growing up and The doctors there will discuss any
we will only know the long-term effects concerns with the team at GOSH.

Compiled by the General Surgery department and Neonatal Intensive Care Unit
in collaboration with the Child and Family Information Group
Great Ormond Street Hospital for Children NHS Foundation Trust, Great Ormond Street, London WC1N 3JH
www.gosh.nhs.uk

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