Antenatal gastroschisis

What is gastroschisis?

Gastroschisis is rare. About 0.04 per cent of babies are born with this.

Gastroschisis is an tummy wall defect which happens when a baby’s tummy does not develop fully, and there is a hole to the side of the umbilical cord.

Some of your baby’s intestine will have come though this hole into the amniotic fluid which surrounds your baby. Their bowel will continue to develop in the amniotic fluid but may be become thickened, which can affect how soon after birth your baby can feed. Sometimes their bowel can become twisted or have its blood supply affected.

When, how and where will my baby be born?

The aim will be for your baby to be born at the Jessop Wing at the Royal Hallamshire Hospital in Sheffield. Gastroschisis babies often are smaller in size than babies who do not have gastroschisis.

Your obstetrician will closely monitor your baby and they will recommend when and how your baby will be born. They will discuss this with you.

What will happen when my baby is born?

When you baby is born they will be seen by the neonatologists (baby doctors) and taken to the neonatal intensive care unit (NICU) at the Jessop Wing to be assessed and monitored.

The bowels on the outside of your baby’s abdomen will be covered by a protective plastic dressing (like Clingfilm) to keep it clean, prevent heat loss and keep it moist. Your baby will be continuously monitored to check their heart rate, breathing rate, oxygen level and blood pressure.

An intravenous (IV) cannula will be inserted in to your baby’s vein to give intravenous fluids, antibiotics and other medicines your baby may need.

A tube called a nasogastric tube (NGT) will be passed through your baby’s nose into their stomach to drain fluid from their stomach. This is to prevent them from being sick and keep them comfortable.

When will my baby go to the neonatal surgical unit (NSU)?

When your baby is stable and a bed is ready for your baby on the NSU, they will be transferred there by Embrace. Embrace are a specialist transport team who are experienced in transferring babies, including those who have gastroschisis.

Sometimes your baby may need to stay on NICU for a longer period of time before being transferred to NSU. In this situation the surgeons will come to NICU at the Jessop Wing to review and be involved in your baby’s treatment there.

How will my baby’s gastroschisis be treated?

Your baby will be examined and assessed by a senior surgeon to decide on the timing of and the type of procedure your baby will need to return your baby’s bowel into their abdomen and to close the defect. The surgeons will discuss with you which procedure would be suitable for your baby.

Silo

Usually a ‘silo’ is used to return your baby’s bowel into their abdomen. A silo is a special plastic see-through tubular bag which is placed over your baby’s bowel. This can be put on your baby in NICU or NSU, but sometimes your baby may be taken to theatre to have this put on. Whilst the silo is on, you will not be able  to take your baby out of their bed, but you will be able to touch, care for and comfort your baby. The nurses will support you with this.

Medicine will be given to your baby to relax them and to make sure they do not feel any discomfort during the procedure. Slowly over the next few days, their bowel can be put back into your baby’s tummy with gentle encouragement from the surgeons.

When your baby’s bowel is all in the abdomen, the silo will be removed and a special dressing is put on to close the hole.

Primary repair

Sometimes a baby is taken to theatre to have the bowel put back into the abdomen, and to have the defect closed with sutures under a general anaesthetic. This is called a Primary repair.

Occasionally babies need to have an operation on their bowel soon after or a few weeks after they are born, and may need more than one operation. This will be discussed with you at the time. Some of these babies have complex gastroschisis.

What is complex gastroschisis?

Around 3 to 4 per cent of babies born with gastroschisis can have complex gastroschisis. This can be because of additional problems related to their gastroschisis. This problem can be a gap in the bowel, a problem with the blood supply or the bowel can become twisted. If your baby has these problems this will be explained and discussed with you.

When will my baby be able to feed?

To begin with, your baby will not be able to feed. This is because their bowel needs time to recover from being in the amniotic fluid, and to start working. Your baby will need to have intravenous feeding until your baby can have milk.

This is called parenteral nutrition (PN). It provides your baby with all the nutrients they need to have to grow which they would normally get from milk. To have PN they will need to have a special ‘drip’ put in which is known as a long line (or central line). Your baby will go to theatre to have one put in but usually they will not need a general anaesthetic for this. Sometimes this is put in on NICU ward at the Jessop Wing before they come to NSU.

Your baby will have a nasogastric tube in their stomach to drain fluid out. The colour and the amount of  fluid will be closely monitored. When less comes out and is paler in colour, this indicates your baby’s bowel is starting to work.

When your baby is ready to have milk they will be given a small amount to begin with by their mouth. The amount will be increased very slowly over a period of days and sometimes weeks depending on how your baby show signs they are digesting their milk. Their progress will be discussed with you.

What milk can my baby have?

Breast milk is very important for every baby but especially if your baby is poorly and if there are problems with your baby’s bowel. If you wish to breast feed or give your baby breast milk, we will support and help you express your breast milk and begin breast feeding.

Your midwife can help you to start expressing after your baby has been born. We have facilities on NSU for expressing and there are infant feeding specialists and NSU nurses who can advise and support you with. Your breast milk can be frozen until your baby is ready to have it. You can also use your colostrum and breast milk for your baby’s mouth care.

If you do not wish to express your breast milk or are unable to do so, your baby can have formula milk of your choice. Sometimes the surgeons may wish your baby to have a special prescription milk formula. This will be discussed with you at the time.

How long will my baby be in hospital?

We cannot predict how long your baby will be in hospital.

Many of the babies with gastroschisis are home by the age of 6 weeks but some are in for a few months. A very small number of babies with gastroschisis are in for much longer due to their complexity.

Your baby’s progress will be closely monitored by the surgeons, nurses and the other teams involved with your baby’s care. You will be updated regularly on your baby’s progress and you will be able to ask questions throughout your stay on NSU.

When you baby is tolerating milk feeds and gaining weight, they can go home. Your baby will be followed up by the paediatric surgeons in our outpatient clinics here at Sheffield Children’s Hospital or at your local hospital.

What is the long term outlook for my baby?

The majority of babies born with gastroschisis do not have long term complications, and they grow up to lead normal healthy lives. For some, their growth may be slow to begin with but they do catch up in time.

Babies who have complex gastroschisis may having feeding issues and need long term intravenous feeding which may cause long term complications. If your baby has complex gastroschisis, this will be explained and discussed with you by the teams looking after you baby when they are in hospital.