Your visit to Kingfisher Ward

The excitement of having a new baby may be combined with worry as their genitals look different so further assessment may have been recommended. Your baby will be admitted to Kingfisher Ward for one day at Great Ormond Street Hospital (GOSH) to meet several specialists who can help you with your questions and to plan the next steps.The admission is likely to happen in the days following your baby’s birth, at a time when you are still adjusting to your new arrival. We realise that this is a difficult time for the entire family, but we will do our best to make you comfortable and to help you understand everything that is happening. If you have any questions, please ask us, even if you may have been told before.

There may be a few different specialists coming to see you and your baby on this day, and various tests may be done. There may be some waiting involved, but you will be told the plan shortly after you arrive. You should be able to go back home, or back to your referring hospital, by the end of the day with a plan for your baby’s care in place.

• Baby’s nappies, wipes, change of clothing, milk and bottles (if bottle fed), dummies or comforters. We can provide sterilisers if needed.
• Breast pumps, bags for expressed milk (we can store these for you throughout the day).
• Any medicines for you or your baby.
• Money for drinks and snacks, phone chargers, pen and paper to make notes.
• Something to fill the time between appointments – ask for details of Wi-Fi from a member of ward staff.

During your day on Kingfisher Ward, you will meet a number of people, all of whom will be involved in looking after your baby. The main members of the team may include:

• Consultant Endocrinologist (hormone specialist)
• Consultant Clinical Psychologist
• Consultant Urologist (assessment of genitals)
• Clinical Nurse Specialist in Endocrinology

You will be shown to a room or a bed where you will be based for your admission. The ward nurses may take some observations, such as your baby’s temperature and weight.

A member of the team will explain what will happen during the admission and explain the tests your baby will need. A doctor from the endocrinology team will sit down with you and ask you some questions: this will begin with asking about your pregnancy and your baby’s birth. Do not worry if you cannot remember every detail – there will be plenty of opportunity during the admission for further discussion. They will usually ask if they can examine your baby too.

At some stage, a doctor from the urology team will also examine your baby, and a psychologist may also meet with you to help you go over some of the information you have already been given, and provide you with some support for the day and in the future.

Your baby may need a variety of tests to help the team reach a diagnosis. The order in which these tests are carried out may vary, but we will try to give you a rough timetable so you know which to expect and when.

The nurses may take some blood samples from a vein in your baby’s hand or foot. The small test
tubes of blood are examined in our laboratory to look at the sex chromosomes (if this has not already been done), hormone levels, and also perhaps DNA.

An ultrasound scan may be performed to look at the lower part of your baby’s tummy and groin to see if there is a womb or gonads (testicles or ovaries) present. An ultrasound scan uses sound waves to take pictures of your baby’s body. The scan usually takes around 15 to 20 minutes, and is easier if your baby’s bladder is full. Jelly is put on the skin but it does not hurt. Your baby may already have had an ultrasound at your hospital, but we find it is useful often to repeat this and sometimes even then the results are difficult to interpret.

Our aim is to work with you as a family and to collect information to decide the most appropriate sex for your baby as soon as possible without rushing into any decisions. Very often this can be done when we have some initial test results and have examined your baby in detail, even if a specific diagnosis has not yet been made. Some results may take longer to come back, or additional tests may be needed later to work out the exact cause. Whatever the situation, the team should be able to give you a potential plan for your baby’s care by the end of the day.

After our meeting you and your baby will either be able to go home, or sometimes, you may be transferred back to your local hospital if further care is needed. After you have left Kingfisher Ward, you can, of course, call the team if you have any questions or concerns.

Within the next few days and weeks, you will need to come back to GOSH (either back to the ward or the outpatients department) for review appointments with the team. At these appointments, we will explain the test results to you and discuss what further management, if any, might be best.