Antenatal information about duodenal atresia

From your antenatal scans there are indications your baby may have duodenal atresia. This information is to help you understand the condition and what will usually happen to your baby if they are diagnosed with duodenal atresia, and are transferred to the Neonatal Surgical Unit (NSU) at Sheffield Children’s NHS Foundation Trust for treatment and care.

What is duodenal atresia?

The duodenum is the first part of the small bowel (intestine) that joins the stomach. In duodenal atresia there is a blockage in the duodenum, usually due to an atresia (small gap in the bowel) or due to a narrowing (known as duodenal stenosis). Due to the blockage fluid and feed is unable to pass through from the stomach in to the intestine.

How is this diagnosed?

Your antenatal scans have indicated your baby may have duodenal atresia due to some observations about you and your baby. This includes polyhydramnios (more amniotic fluid than normal) and, dilatation (distension) of the bowel and stomach noted on your ultrasound scans. Further tests including a MRI may be organised by your obstetrician to obtain more information. Duodenal atresia cannot be definitively diagnosed until after your baby is born.

When, how and where will my baby be born?

The aim will be for your baby to be born at the Jessop Wing, Royal Hallamshire Hospital in Sheffield. Babies with duodenal atresia tend to be born before they are due. 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 and the diagnosis of duodenal atresia has been made?

When your 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 observed. Your baby will have an X-ray of their abdomen, and possibly other tests to confirm they have duodenal atresia. The surgeons may come to see and assess your baby on NICU if they are not transferred to the Neonatal Surgical Unit (NSU) shortly after being born.

Your baby will be continuously monitored to check their heart rate, breathing rate, oxygen level and blood pressure. A plastic tube, often called a ‘drip’ (intravenous cannula) will be inserted in to your baby’s vein to give intravenous fluids, antibiotics and other medicines your baby may need.

Your baby will not be able to feed initially. The nurses will pass a tube called a gastric tube, in through your baby’s nose in to their stomach. This is to drain the contents of the stomach to keep your baby comfortable and to stop them being sick. The surgeons will work with the neonatologists at the Jessops Wing and may see your baby there.

When will my baby go to the Neonatal Surgical Unit?

When your baby is stable and there is a bed 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 duodenal atresia. 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 to review and be involved in your baby’s treatment there.

How will my baby’s duodenal atresia be treated?

Your baby will need an operation. This may be done as keyhole surgery (laparoscopically) or as open surgery. The surgeon will open the blind end of the duodenum and connect it to the rest of the intestines, therefore removing the blockage and enabling feed and fluid to pass through the stomach into the intestine. The surgeons will explain the operation to you at the time and you will need to give consent. You will also be seen by an anaesthetist because your baby will need a general anaesthetic for the operation.

What happens after the operation?

Your baby will be given pain relief and will continue to be monitored closely. They will still have the gastric tube in after the operation. The colour and amount of fluid that drains from this tube will be closely monitored, and will give us information on how your baby is recovering from the operation, when their bowel is starting to work and when to give and increase their milk feeds.

Sometimes the surgeons will put a trans-anastomotic tube in (known as a TAT tube) during the operation. This tube passes through the baby’s nose into the stomach and through the bowel past the operation site. If your baby has a TAT tube in, their milk will be given via this soon after the operation. If your baby does not have a TAT tube they will start having some milk by mouth when the surgical team feels they are ready to start feeds. The amount of milk your baby has will slowly increase as your baby shows signs they are digesting the feed. Most babies who have duodenal atresia will need to have intravenous feeding whilst they are waiting to have their having milk feeds introduced and until they can tolerate the full amount of milk they need. The intravenous feed is called parenteral nutrition (PN) which provides all the nutrients your baby needs to grow which they would normally get from milk. PN is given via a special ‘drip’ in their veins. This will be explained to you at the time.

What milk can my baby have?

Breast milk is very important for every baby but especially if your baby is poorly. If you wish to breast feed or give your baby your breast milk we will support and help you in expressing your breast milk and establishing 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 in the hospital who can advise and support you with this as well as the NSU nurses. 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. Occasionally the surgeons may wish your baby to have a special prescription milk formula. This will be discussed with you at the time.

Will my baby have other problems?

Babies with duodenal atresia can have associated medical and, or genetic problems. These can include problems with the heart, kidneys and spine. You may be aware of these from you antenatal scans and other tests you may have had.

After your baby is born, they will be closely examined by the doctors, have X-rays and ultrasound scans and other investigations as necessary to check if they do have any other problems. This will be explained to you at the time.

How long will my baby be in hospital?

We are unable to predict how long your baby will be in hospital. Some babies with duodenal atresia are only in for a few weeks, others can be in for months. 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 will be able to ask and have questions answered throughout your stay on NSU.

When your baby is tolerating milk feeds and gaining weight they can go home. Your baby will be followed up by a paediatric surgeon in our outpatient clinics here at the Sheffield Children’s hospital or at your local hospital. Your baby may also have regular follow up with other teams who may have been involved with your baby’s care.

What is the long term outlook for my baby?

The majority of babies with duodenal atresia do not have long term complications from this condition. They grow up to lead normal lives. If they have other problems in addition to duodenal atresia they may require ongoing medical care and monitoring dependent on their problems. This will all be discussed with you as necessary.

Are there support groups?

BLISS
Group which offers general support to families of babies born early or sick

68 South Lambeth Road
London SW8 1RL

Website: www.bliss.org.uk
Facebook group: BLISS

Contact a Family

209-211 City Road
London
EC1 1JN

Telephone: 08088083555
Website: www.cafamily.org

Further information

Neonatal Surgical Unit

Telephone: 0114 271 7324 or 271 7705