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Cystic Hygroma 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 Information for Parents / Carers the medical team caring for you or your baby. Looking after and sharing information about you and your child Cystic Information is collected about your child relevant to their diagnosis, treatment and care. We store it in Hygroma 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 Produced May 2010 Website: www.bch.nhs.uk Your baby has been diagnosed with a cystic hygroma. Please use this space to write down any notes This means that there are one or more collections of or questions you might have fluid around the neck. These can sometimes lead to complications. The picture below shows what this might look like. 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 Please use this space to write down any notes called hydrops fetalis. This is where fluid may gather or questions you might have 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 During pregnancy Is there a support group? Further ultrasound scans will be performed at 16 and BLISS 20 weeks to check how your baby is growing and to Bliss is a support group able to offer support and monitor any change in the fluid. At the 20 week scan advice to families with babies with a range of the baby's heart will be checked in detail as some conditions. babies with fluid around the neck can have problems 68 South Lambeth Road with how the heart has formed. London SW8 1RL Helpline: 0870 7700 337 During pregnancy the cystic hygroma may get bigger, Email: [email protected] get smaller, or stay the same size. These scans will let Website: www.bliss.org.uk us keep an eye on this and keep you informed on what is happening. If the fluid does not decrease in Contact a Family size then you will need to have scans every 4 weeks. If there are no other problems noted at the 20 week A UK wide charity offering support, advice and scan, then appointments after that will be with your information regardless of a child's condition or local Antenatal Clinic with the recommendation that disability. Through their Making Contact serve they a scan to measure the growth of the baby is arranged may also be able to put you in touch with other at 28 and 34 weeks of pregnancy. families who are affected by the same disability / medical condition as your child. Delivery Contact a Family The way your baby is delivered has to be decided near 209-211 City Road the due date and will be different for each woman. It London EC1 1JN may be necessary for you to deliver at a centre other Freephone Helpline: 0808 808 3555 than your local hospital. Email: [email protected] Website: www.cafamily.org.uk 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. Page 1 | When a child dies at Birmingham Children’s Hospital When a child dies at Birmingham Children’s Hospital | Page 14 What is the outlook for children with cystic Treatment and Care After Delivery hygroma? Small lesions should not affect your baby who can be Children with small cystic hygromas or uncomplicated cared for as normal at your local hospital and go cases usually have a good outcome, with either no home at the normal time. scar or only a small scar evident. If the cystic hygroma is large or affects your baby's For children with larger cystic hygromas there may be breathing, your baby will need to be admitted to a a larger but often faint scar on the neck. Some Neonatal Unit and may need intensive care (i.e. children get recurrent cystic hygromas and need ventilation) and will need to be seen by a surgeon. further management. Plans for your baby's care will then be discussed with you including transfer to a surgical unit. Those children most at risk are those with extensive cystic hygromas that extend into the chest. These can Although these babies often cannot take milk at this be difficult to remove, sometimes recur and rarely are time. If you plan to feed your baby breast milk later life threatening. on (either by breast feeding or by bottle) you should start expressing breast milk within 6 hours of birth. The major complication of surgical removal can be When your baby has recovered from the operation unavoidable damage to nerves that control facial they can then receive your milk. The nursing staff on movements. This will be managed by various teams at the unit where your baby is will be able to show you the Specialist Centre. how to express and store your milk and arrange for you to have access to a breast pump. Providing breast Another important complication can be fluid (chyle) milk for your baby improves their chances of collecting in the chest. This happens early after the overcoming the challenges they face whilst in operation during the hospital stay. It may settle on intensive and special care. 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. Page 13 | When a child dies at Birmingham Children’s Hospital When a child dies at Birmingham Children’s Hospital | Page 2 Surgery After Surgery (When surgery is needed) Management of your baby's condition will depend on Your baby will come back to the ward or Intensive the clinical findings and the results of Imaging. Care Unit to recover, and you will be able to visit as Sometimes small cystic hygromas can go away on soon as he or she is settled back on the ward. All their own, over a number of months with no specific babies are closely monitored after the operation, and treatment needed. There are a number of ways to so your baby will be connected to monitors to check help manage other cystic hygromas including his or her breathing, heart rate and oxygen levels. He drainage, injections and surgical removal. Sometimes or she will also be given pain relief through the 'drip'. a combination of treatments is needed and more Occasionally there may be a tube from the operation than one operation may be required. The length of site to drain off fluid. This will be removed as soon as time your baby spends in hospital and the number of it is no longer needed. Over time, the drips and admissions needed will depend on the cystic hygroma monitors will be removed one by one. and the course of treatment. The nurses on the ward will encourage you to look If an operation is needed the surgeon will explain after your baby as much as you feel able while he or about the operation in more detail, discuss any she is recovering. You may feel anxious, especially worries you may have and ask you to sign a form while your baby is connected to drips and monitors, giving consent for your child to have the operation. but it will become easier with time. If you are worried An anaesthetist will also visit you to explain about the about caring for your baby, please talk to the nurses.
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