Information for Parents / Carers

Gastroschisis

Produced May 2010

Further Information

Looking after and sharing information about you and your child

We hope this information leaflet has been useful and will help you to understand all about your child's condition. However some medical information can be difficult to understand. If you need more information or have any concerns please speak to a member of the medical team caring for you or your baby.

Information is collected about your child relevant to their diagnosis, treatment and care. We store it in written records and electronically on computer. As a necessary part of that care and treatment we may have to share some of that information with other people and organisations that are either responsible for or directly involved with your child's care. If you have any questions please talk to the people looking after your child or contact PALS (Patient Advice and Liaison Service) - you can do this by calling the hospital main number and asking to be put through to PALS.

Clinical Photography & Design Services, Birmingham Children's Hospital NHS Foundation Trust, Steelhouse Lane, Birmingham B4 6NH

Website: www.bch.nhs.uk

Your baby has been diagnosed with gastroschisis. This means there is a small hole next to the umbilical cord that is allowing some of the bowel to escape into the amniotic fluid around the baby as shown in the picture below.

This leaflet will give you more information on the condition and what you can expect during pregnancy, delivery and after the baby is born.

The cause of such a condition is unknown but is often associated with pregnancy in younger mothers.Such a condition is not usually associated with other differences visible on scans or chromosomal abnormalities. However, in 5-10% of cases there can be associated 'blockage' along the small bowel (intestinal atresia).

Gastroschisis

Please use this space to write down any notes or questions you might have

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During Pregnancy

Delivery

1. A detailed ultrasound scan is performed to check for any other abnormalities.

2. Regular ultrasound scans are performed at least every 4 weeks. These scans will check the growth of your baby, the amount of fluid surrounding and blood flow to the baby.

It may be that in the later stage of your pregnancy, there may be other checks including things like the baby's heart beat and these checks may need to be carried out often 2-3 times per week.

Gastroschisis is often associated with the baby being small, it is normal to plan induction of labour between 38 and 40 weeks of gestation. In a small number of babies (probably one in five), there is a need to deliver the baby before 38 weeks.

In general, there is no requirement to deliver babies with gastroschisis by caesarean section. However, details about how and when your baby will need to be delivered will be discussed with you in the Antenatal Clinic.

If induction is needed, it will be necessary to ensure that there are neonatal and surgical beds available for your baby once he/she is born. This can only be

Please use this space to write down any notes or questions you might have

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Please use this space to write down any notes or questions you might have

agreed on the day of your admission and may mean that the induction is delayed or on rare occasions that you would transfer to another unit for delivery and/or surgery.

When the baby is born he or she will be assessed and reviewed by the Neonatalogists, (doctors looking after newborn babies). Your baby's lower body will be placed in a plastic bag to protect the bowel.

All babies will need an intravenous drip to provide them with fluids and medication. All will also need a naso-gastric tube. This is where a tube is passed through the nose into the stomach (nasogastric tube or NG tube). This will drain off the contents of the stomach and stop your baby feeling and being sick. It also releases any excess air that is in the stomach and intestine which could make your baby uncomfortable.

Your baby will be transferred by a special newborn transport team to the surgical unit as quickly as possible.

Although your baby cannot take milk at this time, if you plan to feed your baby breast milk later on (either by breast feeding or by bottle) you should start expressing breast milk within 6 hours of birth. When your baby has recovered from the operation they can then receive your milk. The nursing staff on the unit where your baby is will be able to show you

Treatment and care after delivery

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how to express and store your milk and arrange for you to have access to a breast pump. Providing breast milk for your baby improves their chances of overcoming the challenges they face whilst in intensive and special care.

Sometimes the intestine can be reduced back into the abdomen slowly over a period of a few days by placing them in a small bag known as a silo. In other cases an operation will be performed on the first day to put the intestines back in.

In 5-10% of cases the intestines are incomplete and a number of operations may be needed over a period of weeks.

The surgeon will explain about the treatment or operation in more detail, discuss any worries you may have and gain your consent for the operation. An anaesthetist will also visit you to explain about the anaesthetic.

All surgery carries a small risk of bleeding during or after the operation. Every anaesthetic carries a risk of complications, but this is very small. Your baby's anaesthetist is a very experienced doctor who is trained to deal with any complications. All the doctors who perform this operation have had lots of experience and will minimise the chance of these risks.

Surgery

Is there a support group?

information@bliss.org.uk www.bliss.org.uk

helpline@cafamily.org.ukwww.cafamily.org.uk

BLISS BLISS is a group which offers support and advice to families with babies with a range of conditions.68 South Lambeth Road London SW8 1RL Helpline: 0870 7700 337 Email: Website:

Contact a Family

A UK wide charity offering support, advice and information regardless of a child's condition or disability. Through their Making Contact serve they may also be able to put you in touch with other families who are affected by the same disability / medical condition as your child.

Contact a Family209-211 City RoadLondon EC1 1JNFreephone Helpline: 0808 808 3555Email:Website:

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the dressing will have been removed and the operation site should be healing nicely. The nurses on the ward will explain any special care needed for the operation site. We will send you details of your outpatient appointment in the post, soon after you leave hospital.

You should call your local hospital if you are concerned.

The outlook for children with gastroschisis is very good, with the majority growing up to live normal lives. However, a very small number will be left without enough intestines to be able to manage without long term intravenous feeding and further medical care. Where this is the case the surgical team and your local hospital will advise and support you on what further care and treatment may be needed. Dieticians will also be available to provide advice.

Your baby will have a scar which he or she could feel self-conscious about in later life. There are plenty of options for reducing the appearance of scars, which include silicone gel, steroid injections or plastic surgery. For more information about scars and how to deal with them, please ask to see an occupational therapist. Another alternative that covers up scars rather than reducing them is cosmetic camouflage.

The Outlook for Children with gastroschisis

After Surgery

Your baby will come back to the ward to recover, and you will be able to visit as soon as he or she is settled back in the incubator. All babies are closely monitored after the operation, and so your baby will be connected to monitors to check his or her breathing, heart rate and oxygen levels. He or she will also be given pain relief through the 'drip'.

With gastroschisis it can take many weeks for the intestines to recover and start to work. During this time he or she will be fed through a tube into the veins (Total Parenteral Nutrition or TPN). This will gradually be replaced by breast or formula milk given through the naso-gastric tube when your baby is able to tolerate this. As your baby recovers, you will be able to feed him or her from the breast or bottle. Over time and depending on how quickly your baby is recovering, the drips and monitors will be removed one by one.

The nurses on the ward will encourage you to look after your baby as much as you feel able while he or she is recovering. You may feel anxious, especially while your baby is connected to drips and monitors, but it will become easier with time. If you are worried about caring for your baby, please talk to the nurses.

Your baby will be transferred to another ward at the hospital or to your local hospital, once he or she is feeding properly and gaining weight. By this time,

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