Cystic Hygroma. Further Information. Looking after and sharing information about you and your child

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1 Further Information 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. Looking after and sharing information about you and your child 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. Information for Parents / Carers Cystic Hygroma Clinical Photography & Design Services, Birmingham Children's Hospital NHS Foundation Trust, Steelhouse Lane, Birmingham B4 6NH Website: Produced May 2010

2 Your baby has been diagnosed with a cystic hygroma. This means that there are one or more collections of fluid around the neck. These can sometimes lead to complications. The picture below shows what this might look like. Please use this space to write down any notes or questions you might have This leaflet will give you more information on the condition and what you can expect during pregnancy, delivery and after the baby is born. Cystic Hygroma Some babies can have a swelling in the neck that is made up of fluid known as lymphatic fluid. The condition is thought to be caused when there is a block stopping the fluid draining as it should. In some babies this can affect the blood flow in the neck and the baby may then develop a condition When a child dies at Birmingham Children s Hospital Page 16

3 Please use this space to write down any notes or questions you might have called hydrops fetalis. This is where fluid may gather around the heart, lungs and inside the baby's tummy. If this develops the outlook for your baby is very poor, around 80-90% will not survive pregnancy. There is also an increased risk of other abnormalities (such as Turner's Syndrome and Down Syndrome these are known as chromosome abnormalities). The risks in your specific case will be discussed in detail with you. You will have the option to have tests carried out to find out if your baby has any other abnormalities. What are chromosomes? The human body is made up of billions of little cells. Inside the cells there should be 23 pairs of chromosomes. Chromosomes contain thousands of genes which are the packets of information that tell the body how to work. Sometimes things go wrong and there can be too many or too few chromosomes, for example, in Downs Syndrome there is 1 extra chromosome, and in Turner Syndrome there is one less. Page 15 When a child dies at Birmingham Children s Hospital

4 During pregnancy Further ultrasound scans will be performed at 16 and 20 weeks to check how your baby is growing and to monitor any change in the fluid. At the 20 week scan the baby's heart will be checked in detail as some babies with fluid around the neck can have problems with how the heart has formed. During pregnancy the cystic hygroma may get bigger, get smaller, or stay the same size. These scans will let us keep an eye on this and keep you informed on what is happening. If the fluid does not decrease in size then you will need to have scans every 4 weeks. If there are no other problems noted at the 20 week scan, then appointments after that will be with your local Antenatal Clinic with the recommendation that a scan to measure the growth of the baby is arranged at 28 and 34 weeks of pregnancy. Delivery The way your baby is delivered has to be decided near the due date and will be different for each woman. It may be necessary for you to deliver at a centre other than your local hospital. If the neck swelling is not too large then normal vaginal delivery is preferred. There may however be reasons for preferring delivery to be by Caesarian section and if this is the case this will be discussed with you. Is there a support group? BLISS Bliss is a support group able to offer support and advice to families with babies with a range of conditions. 68 South Lambeth Road London SW8 1RL Helpline: 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 Family City Road London EC1 1JN Freephone Helpline: Website: Page 1 When a child dies at Birmingham Children s Hospital When a child dies at Birmingham Children s Hospital Page 14

5 What is the outlook for children with cystic hygroma? Children with small cystic hygromas or uncomplicated cases usually have a good outcome, with either no scar or only a small scar evident. For children with larger cystic hygromas there may be a larger but often faint scar on the neck. Some children get recurrent cystic hygromas and need further management. Those children most at risk are those with extensive cystic hygromas that extend into the chest. These can be difficult to remove, sometimes recur and rarely are life threatening. The major complication of surgical removal can be unavoidable damage to nerves that control facial movements. This will be managed by various teams at the Specialist Centre. Another important complication can be fluid (chyle) collecting in the chest. This happens early after the operation during the hospital stay. It may settle on special feeds, but may (rarely) require further surgery. As all of the above conditions are complex both short and long term follow up by the Surgical team will be needed. Treatment and Care After Delivery Small lesions should not affect your baby who can be cared for as normal at your local hospital and go home at the normal time. If the cystic hygroma is large or affects your baby's breathing, your baby will need to be admitted to a Neonatal Unit and may need intensive care (i.e. ventilation) and will need to be seen by a surgeon. Plans for your baby's care will then be discussed with you including transfer to a surgical unit. Although these babies often 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 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. Page 13 When a child dies at Birmingham Children s Hospital When a child dies at Birmingham Children s Hospital Page 2

6 Surgery Management of your baby's condition will depend on the clinical findings and the results of Imaging. Sometimes small cystic hygromas can go away on their own, over a number of months with no specific treatment needed. There are a number of ways to help manage other cystic hygromas including drainage, injections and surgical removal. Sometimes a combination of treatments is needed and more than one operation may be required. The length of time your baby spends in hospital and the number of admissions needed will depend on the cystic hygroma and the course of treatment. If an operation is needed the surgeon will explain about the operation in more detail, discuss any worries you may have and ask you to sign a form giving consent for your child to have the operation. An anaesthetist will also visit you to explain about the anaesthetic. All the doctors who perform this operation have had lots of experience and will minimise the chance of problems occurring. All operations carry a small risk of bleeding, during or afterwards. Every anaesthetic carries a risk of complications, but this is very small. Your child's anaesthetist is a very experienced doctor who is trained to deal with any complications. After Surgery (When surgery is needed) Your baby will come back to the ward or Intensive Care Unit to recover, and you will be able to visit as soon as he or she is settled back on the ward. 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'. Occasionally there may be a tube from the operation site to drain off fluid. This will be removed as soon as it is no longer needed. Over time, 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. You will be transferred to another ward within the hospital or to your local hospital once your baby is feeding properly and gaining weight. Some babies will be able to go straight home. Page 3 When a child dies at Birmingham Children s Hospital When a child dies at Birmingham Children s Hospital Page 12

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