Urology and renal care for babies and young children with spina bifida – information for parents

This leaflet has been written for the parents of babies and children with spina bifida to provide information on the urology and renal (kidney) care your child will receive. Please keep this leaflet to refer to as your child gets older.

What is the urinary tract and why does it need special attention in children with spina bifida?

The urinary tract includes the parts of the body that are responsible for making and passing urine:

• kidneys - make urine
• ureters - take urine from the kidneys to the bladder
• bladder - stores urine
• urethra - (wee tube) the tube that carries urine from the bladder to outside the body

Children with spina bifida usually have normal kidneys and ureters at birth. However, because of problems within their spinal cord, the bladder does not always function correctly; this is called a ‘neurogenic bladder’.

Rarely the bladder does not empty at all. More commonly the bladder only partially empties, and this can lead to urine infections (UTI, see below) which can sometimes lead to kidney damage. Bladders that do not empty properly may also have abnormally high pressures inside them, and; this can lead to kidney damage. Children whose bladders do not empty properly may also have difficulty getting dry during toilet training.

To keep children as safe as possible from the risks of infections and kidney damage we assume all babies are not effectively emptying their bladders until we can prove otherwise. As children grow we continue to re-assess their bladder function. Our aims are to achieve effective and complete bladder emptying and by doing so, limit the chance of infections and other longer term problems of a neurogenic bladder.

Who will my child be seen by?

All babies born with spina bifida will be allocated a consultant children’s doctor with specialist knowledge of the urinary tract. Referral may happen prior to delivery, or as soon as your baby is born.

Our paediatric surgery and urology nurse specialist team will also work very closely with you and your baby and will be a point of contact for you throughout your baby’s childhood. Please see The Paediatric Surgery / Urology Clinical Nurse Specialist Team – Information for parents and carers.

What happens immediately after birth from a urological/ renal (kidney) perspective?

When your baby is born, they may pass urine and so have wet nappies. Unfortunately this does not mean that they are emptying their bladder completely, as some urine may be left behind.

To accurately measure your baby’s urine, we will need to pass a small tube, called a catheter, into your baby’s urethra (wee tube). This will be carried out within hours of your baby being born. Usually, the catheter used has a small balloon which is inflated after the catheter is passed and it is this balloon which prevents the catheter falling out (see picture below). This type of catheter is called an ‘indwelling catheter.’

What is clean intermittent catheterisation (CIC) and when will it commence?

After babies have surgery on their spine, it is important that they lie on their front (tummy) while their wound heals. Once your baby can lie on their back for at least 60 minutes, at regular intervals (three to six hourly) the indwelling catheter can be removed. The catheter is removed by a nurse who will deflate the balloon and gently withdraw it. The process of determining how well the bladder empties can now begin using a technique called ‘clean intermittent catheterisation’ (CIC) and bladder scanning. CIC involves the passing of a single-use sterile catheter into the bladder. Once urine has stopped draining, the catheter is immediately removed. There are different brands of catheter, which you will be shown; the image below is of one of the most common brands used, as it has a very soft tip.

To begin with, CIC will be undertaken to find out how much urine is left in your baby’s bladder after they have passed urine into their nappy (this is called ‘residual urine’). The frequency of CIC will differ for each baby, but will usually start at three hourly intervals. If your baby is passing urine independently, and residual volumes of urine are small, then we will gradually lengthen the time between catheterisations. We define ‘small’ as a residual volume of less than 30ml on the majority of catheterisations for three consecutive days.

Ultimately, a few babies will need CIC three-hourly, some will require CIC four times a day and others only once a day.

Even if your baby appears to be effectively emptying their bladder, we often still advise that CIC is performed daily. This is because long-term research studies have shown that the majority of children with spina bifida will require long-term CIC for bladder management, and reintroducing CIC in the toddler or older child can be difficult. It is for this reason that we encourage parents to learn CIC.

Who will teach me CIC, and when?

You will be taught how to perform CIC by our nurse specialist team whilst your baby is still an inpatient at the hospital. We appreciate that this can seem a daunting task, so the nurse specialist team will work with you at your own pace. We offer support and help you gain confidence so that by the time your baby is ready for discharge you will be competent and confident in performing CIC.

What medication might be needed from a urological/ renal (kidney) perspective?

Any baby or child who requires CIC will initially be on a small dose of an antibiotic to help prevent a urine infection (UTI); this is called a ‘prophylactic dose’. As children get older, some may also require medication to help relax their bladder and prevent wetting accidents.

What tests/ investigations will take place, and when?

As your baby grows and develops, we will closely monitor their urinary system. Although the type and timing of different investigations (tests) will depend on each individual child, the following is a chart of the most common types of tests and their timing throughout the first five years of childhood.

Notes on table above

1. If raised at birth.
2. If clinical concern exists.
3. Every year until toilet trained, continent and bladder emptying demonstrated.
4. Between three and 12 months as a baseline.
5. Between one and two years of age.
6. Between three and four years of age.
7. Between three and six months as a baseline.
8. Between five and eight years of age.

What do the tests/ investigations involve?

At each hospital appointment the specialist doctors and nurses will ask you questions:

• about how your child has been overall
• if any urine infections have occurred
• what volume of urine your child is passing by themselves and/or with CIC

Your child will also have their height and weight checked and may also have an examination of their abdomen (tummy) to feel the bladder.

Blood pressure

High blood pressure could indicate that the kidneys are not working as well as they should be. Therefore, your child will have their blood pressure checked every time they are seen in clinic.

Ultrasound scan

An ultrasound scan uses sound waves to take pictures of your child’s body. The sound waves are of a much higher frequency than normal so you cannot hear them. A jelly is used to help conduct them. The ultrasound machine looks the same as the ones used to perform your scans while pregnant.

The scan will be of your child’s urinary system including the kidneys and bladder. It will look specifically at the kidneys to assess their growth, the thickness of the bladder wall and what the surface of the bladder looks like.

Ultrasound scans are carried out in the Radiology Department, either by a radiologist (doctor specialised in imaging techniques) or a sonographer (someone who specialises in ultrasound imaging).

Video urodynamics

A video urodynamics test is a specialised type of test that measures the pressure inside your child’s bladder. A special catheter similar to those used for CIC is passed into the bladder and a second catheter is passed just inside your child’s back passage (anus). The bladder is then filled with a liquid called ‘contrast’ which shows up on x-rays. A series of x-ray pictures are taken to look for any backflow of urine from the bladder back up towards the kidneys (called ‘reflux’) and the pressure inside the bladder is measured. Catheters are removed at the end of the test.

Non-invasive urodynamics

Non-invasive urodynamics, also called ‘serial bladder scanning’, assesses the bladder function. Your child will be admitted to one of our children’s wards for the day. Each time that your child needs to void (wee), you will need to collect the urine in a container so it can be measured. Immediately after your child has passed urine, a member of the children’s urology nurse specialist team will scan your child’s bladder with a portable bladder ultrasound machine to determine if there is any urine left in the bladder. We have a separate leaflet on non-invasive urodynamics; please ask if you would like one.

Nuclear medicine DMSA scan

This test shows how well your child’s kidneys are working and is very sensitive in detecting any scars caused by urinary tract infections. We have a separate leaflet on DMSA scans in children; please ask if you would like a copy.

What is a UTI? When and how is my baby checked for UTIs?

A urinary tract infection (UTI) is an infection in the urinary tract which occurs when bacteria (germs) from outside the body enter the bladder, multiply and cause an infection. In some cases, the bacteria will move up out of the bladder and towards, or into, one or both of the kidneys.

If infections enter the kidney, the infection can cause a scar to form on the kidney. This scarring is permanent. Scars on kidneys can cause problems with how well the kidney functions and can lead to high blood pressure. It is therefore very important that urinary tract infections are prevented and, when they do occur, that they are treated without delay to prevent these scars occurring.

Symptoms of a urinary tract infection vary with age. In babies and young children, urinary tract infections can have very non-specific signs.

UTI symptoms in infancy

• high temperature (fever)
• tiredness
• irritability
• poor feeding
• smelly nappies
• vomiting
• abdominal pain (‘tummy ache’)

UTI symptoms in childhood

• high temperature (fever)
• increased frequency of passing urine
• tiredness
• vomiting and / or diarrhoea
• being off their food
• abdominal pain (‘tummy ache’)
• back pain
• bed wetting when previously dry
• smelly or bloody urine
• pain when weeing

Before leaving hospital you will be taught how to recognise a UTI and how to catch urine samples. Before discharge home we will provide you with sterile specimen containers should a specimen need to be collected at home.

It is important that your child’s urine is always sent to the laboratory to be tested if a UTI is suspected. In adults and older children urine can be ‘dip stick tested’ but this is an unreliable test in children that are receiving CIC or have incomplete bladder emptying.

We have a separate leaflet on urinary tract infection in children; please ask us if you have not been given a copy.

What follow up will be arranged?

Your child will be seen in our specialist clinics by a consultant community paediatrician, consultant paediatric neurosurgeon, consultant paediatric urologist and a specialist nurse from the paediatric surgery/ urology team. Often ‘joint clinics’ are held so your child is reviewed by more than one specialist at the same clinic appointment. This helps to reduce the numbers of clinic visits overall.

Chaperoning

During your child’s hospital visits they will need to be examined to help diagnose and to plan care. Examination may take place before, during and after treatment, will be performed by trained members of staff and will always be explained to you beforehand.

A chaperone is a separate member of staff who is present during the examination. The role of the chaperone is to provide practical assistance with the examination and to provide support to the child, family member/ carer as well as to the person examining.

Who should I contact if I have any queries, concerns or questions?

If you have any queries, or for further information, please contact your nurse specialist, Monday to Friday 08:00 (8am) to 18:00 (6pm), on 01223 586973.

The ward your child was on …………………………….