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What is gastroschisis?
Gastroschisis is where the bowel (and rarely other organs such the stomach or bladder) grows outside of a baby’s body near the belly button.
This happens because a hole was left in the abdominal wall when it formed during pregnancy.
The bowels are not contained in a covering but are exposed to the amniotic fluid during pregnancy then the air when your baby is born.
Gastroschisis affects around 1 in 3,000 babies.
Babies of mothers under the age of 20 are at an increased risk.
Causes
The cause of gastroschisis is not known.
The chance of it developing is the same whether or not a close relative has the condition.
It is not caused by anything the parents have done or not done during pregnancy.
It is not inherited and any future pregnancy is not at an increased risk.
Diagnosis
Diagnosis of gastroschisis is usually made during an antenatal ultrasound scan as the bowels can be seen outside the body. The umbilical cord is also seen pushed to the side by the intestines.
It is rare for gastroschisis to be diagnosed after birth.
During pregnancy
If your baby is diagnosed with gastroschisis, you will be offered:
- consultant-led care
- close monitoring of your baby’s growth
- extra antenatal appointments and scans
- a planned delivery at St Mary’s Hospital (part of the Manchester Centre for Neonatal Surgery)
- appointment to see a neonatal surgeon and neonatologist at the FANS clinic
Giving birth
You will be offered to have your labour induced at around 37 weeks.
After 37 weeks, the chances of complications from gastroschisis increases.
Gastroschisis does not usually prevent a vaginal delivery.
Immediately after birth:
- your baby will be passed to neonatal doctors to be cared for
- it is unlikely you will be able to hold your baby straight away
- your baby’s bowel will be wrapped in a medical ‘cling film’ to protect the bowel and reduce fluid and heat loss
- a nasogastric tube (NG tube) is placed in your baby’s nose and passed into their stomach. This will empty the stomach to prevent vomiting and swelling
- your baby will be put on a drip so they can receive intravenous fluids and antibiotics
- your baby will be taken to the neonatal intensive care unit (NICU)
Treatment
All babies with gastroschisis need a surgical intervention and this may or may not be under general anaesthetic.
Your baby’s surgical team and anaesthetist will explain the operation to you in detail.
You should ask them any questions you have. It might help to write down the questions or worries you have before you speak to them.
Surgery without silo
Some babies can have an operation to put all the intestines back inside their tummy in one go. The tummy wall is then closed using stitches or special dressings.
Occasionally, babies will have this operation on the NICU instead of them going to the operating theatres below the NICU. Although your baby will be awake during this we can reassure you that they will not experience pain from the bowel being put back in to their abdomen.
Silo and surgery
Because newborn babies’ tummies are small, there is not always enough room for all of the bowel to fit inside.
In this situation, they will have an operation to put in as much bowel as possible into their tummy. The rest of the bowel is then placed in a special bag called a silo. This is usually performed on the NICU and although your baby will be awake during this we can reassure you that they will not experience pain from this procedure.
The silo is hung above the baby’s tummy and gravity helps the bowel to gradually return to the tummy over a period of days. The silo is also reduced in size on a daily basis to help to gently squeeze more bowel back inside. This process takes around 5 days on average.
Once most of the bowel has gone back inside the tummy, the baby can have another operation for the bag to be removed and the hole in their tummy to be closed.
Recovery
Your baby will recover on the neonatal unit after their operation(s).
After the operation your baby is likely to need:
- care on the NICU
- a drip (intravenous fluids) so they can receive fluids and antibiotics
- monitoring for their breathing, heart rate and oxygen levels
It is possible, but not likely, that your baby will need to be on a ventilator to help them breathe.
Feeding
Your baby will initially be fed with total parenteral nutrition (TPN) through a tube that goes into a vein in the chest. This is to provide nutrients in the period before the bowel is working and milk can be given. It will take a number of weeks for your baby to start to have milk.
Later, when the bowel is working, they will be fed with milk (expressed breast milk or formula). This can be given orally or through a nasogastric tube (described above).
When your baby is fully breast or bottle fed and gaining weight steadily, they will be able to back to their local hospital or home.
Complications
Complicated gastroschisis
During pregnancy, the bowel can sometimes be blocked. This is known as an atresia. The bowel can sometimes be damaged (perforated) or parts can be missing.
Sometimes this can be seen during antenatal scans, but it may not be diagnosed until after you have given birth. These problems will require additional surgical procedures.
Sometimes a blockage cannot be diagnosed for several weeks after baby is born.
Short bowel syndrome
Short bowel syndrome is where the intestine is too short to absorb all of the nutrients a baby needs.
Babies with short bowel syndrome may need their feeds topped up or replaced with TPN for a long period of time while their intestine recover.
Intestinal failure
There is a very small chance that the intestines may be permanently damaged and not able to absorb nutrients. If this happens, long term TPN will be needed and this can eventually be done at home. Long term TPN can cause problems including liver disease. If your baby develops this they will placed under the care of the gastroenterology (bowel) doctors.
Related medical conditions
Most babies with gastroschisis do not have other medical conditions.
Hernias
Babies who have had gastroschisis repair have can develop a hernias around their belly button. This can be seen as a bulge in the tummy wall and they may need it repairing with an operation later in life.
Undescended testicles
Boys with gastroschisis have an increased risk of undescended testicles.
If surgery is needed to move the testicles this will happen at around 1 year old.
Outlook
Babies who have had surgery for gastroschisis do not usually have any ongoing problems and many can lead an entirely normal life.
Some babies and children who have gastroschisis can be small for their age for the first few years but most eventually reach their expected height and weight.