Spina Bifida - Guidance for the Care and Management of Infants and Children with

Publication: 28/07/2015  
Next review: 31/12/2022  
Clinical Guideline
ID: 4278 
Approved By: Trust Clinical Guidelines Group 
Copyright© Leeds Teaching Hospitals NHS Trust 2019  


This Clinical Guideline is intended for use by healthcare professionals within Leeds unless otherwise stated.
For healthcare professionals in other trusts, please ensure that you consult relevant local and national guidance.

Guidance for the Care and Management of Infants and Children with Spina Bifida

Spina bifida pathway for Leeds admissions
Urology Care Pathway
Urology care guidance for infants and Children with Spina Bifida
Guidance for Bowel management
Care pathway for Therapy management
Orthopaedic guidance for managing hips, feet and knees
Neurosurgical management
Open and closed Spina bifida, neurosurgery care pathway
Appendix 1. Discharge checklist for Neurosurgical infants
Appendix 2. Spina Bifida patients medical discharge summary guide
Appendix 3. Parents Red Book - Top to Toe Information
Appendix 4. Audit form template
Appendix 5. List of Health professionals involved in care
Appendix 6. Referral form for Leeds Community teams ICAN
Appendix 7. Referral form for Orthopaedic Team
Appendix 8. Contact List for Community Paediatricians


Spina bifida is a complex condition that requires multi professional team working to ensure the infant, child and family experience quality healthcare to ensure they achieve their best potential overall.

Spina bifida is a congenital abnormality in the development of the spinal cord and surrounding bones through incomplete closure of the neural tube, leaving a gap or split in the spine. The spinal cord may also be damaged. There are many differing types of this condition from the most severe -myelomeningocele to a less severe spina bifida occulta (hidden). Most infants born with spina bifida also develop hydrocephalus (abnormal accumulation of cerebrospinal fluid CSF) requiring insertion of a drainage system placed into the lateral ventricles the form of a ventricular peritoneal (VP) or ventricular atrial (VA) shunt. The following information illustrates an overall guide for infants and children with spina bifida.


Urological Guidance for Children With Spina Bifida

Infant born with Spina bifida

  • Normal control ~ 5% 
  • Urinary Iincontinence >95 %
  • Urinary Tract Infection (UTI) >90 %
  • Constipation > 80 %
  • Sexual dysfunction & fertility problems are common.

Consider the following for each patient:

  1. Anatomical level of defect (The bladder innervation is determined by the distal, not the proximal extent of the lesion)
  2. Motor level
  3. Sensory level
  4. Is the bladder palpable? Is the bladder expressible (manual emptying by hand)?
  5. Is the anus open? Is there an intact anocutaneous reflex?
  6. Presence of hydrocephalus

Clinical Considerations:

  • Continuous dribbling – Sphincter incompetence
  • Discrete spontaneous stream – Contractile bladder
  • Interrupted stream – dysynergia (disruption of central nervous system regulation of the micturition reflex) between Detrusor muscle and sphincter
  • Febrile urinary infections are suggestive of upper tract complications
  • Distended bladder – Outflow obstruction
  • Expressible bladder – neuropathic bladder with some sphincter incompetence
  • Bladder that cannot be expressed – sphincter competence or empty bladder due to gross incompetence
  • No matter the severity of the neurological defect, neuropathic bladder is certain if the bladder can be readily expressed, conus (tapered, lower end of the spinal cord) reflexes are negative or if there is no sensory sparing (general arousal to pin prick)
  • Bladder function may prove to be normal if bladder cannot be expressed and conus reflexes are positive and there is sacral sparing, a rare combination in practice.


Immediate Post natal management

Bladder to be catheterised ideally pre operatively or during spina bifida repair with 6F Foley catheter.
Foley catheter to be kept in situ until the spinal wound has healed and baby is able to lie supine.

Ultrasound (USS) of the renal tract 48 hours post catheter removal or at 2 days of life if not taken to theatre (Closed spina bifida / lipomyelomeningocele)
Initial treatment is always medical

  • Clean Intermittent Catheterisation (CIC) Evidence 1 Grade A1
  • Antimuscarinics Evidence 2 Grade B1
  • Alpha Blockers Evidence 3 Grade B1 (p 22)

Criteria to start CIC in neonatal period (Once daily at least for all SB patients- to be taught by Neonatal Unit staff prior to discharge)
Early introduction of CIC and antimuscarinics preserves upper tracts, promotes better bladder function and reduces augmentation rates.

Unfortunately as deterioration of bladder dynamics is a common occurrence it is likely that CIC will be required more frequently in the future. We therefore recommend that all children, born with spina bifida, should undergo CIC as it is a useful skill to have and easier to adapt to the younger the child is. See below for details.

Frequency of CIC:

Start CIC Three times a day.

Support and teach parents to perform CIC once a day to keep familiar with the practice as per trust guidelines.

Referral sent to Urology clinical nurse specialists (CNS) for support following discharge.

A copy of the discharge summary to include baseline renal function tests, renal US report to be sent to Consultant Paediatric Surgeon -Urology and Local Paediatrician

Adjust frequency of CIC as per guideline:

  • Once daily despite normal RUSS
  • >10-15 ml residual urine volume- twice daily
  • >20 ml residual urine volume- three times daily
  • >30 ml residual urine volume prior to each 4 hourly feed

Criteria for Urology Nurse Specialist support:

  • Refer to Urology clinical nurse specialists (CNS) for support following discharge as required.
  • Parents/local CCN team to ring Urology CNS for advice if any concerns relating to CIC technique or issues with catheter supplies.

2- 3 months of age:

Renal U/S +/- MCUG if not done earlier.

Indications for micturating cystourethrogram (MCUG):

  • Dilated upper tracts at initial USS
  • Recurrent urinary tract infections (UTI)
  • Thick- walled bladder

Review by local Paediatrician in clinic with a renal tract USS done at local hospital prior to clinic.

1) Is the child having discreet episodes of micturition or continuously dribbling ?

2) Have there been any UTI’s? If no UTI’s and MCUG shows no reflux, can stop any prophylactic antibiotics. Prophylaxis not necessary on primary discharge.

3) What is the stooling pattern?

4) If USS appearances stable reduce frequency of CIC.

5) If upper tract dilatation or thick walled bladder persists or appears then start Anti chlolinergics- Oxybutynin ( 0.1mg/kg twice daily )

6) If previously not started on regular CIC, if any of the clinical or USS criteria are now met, then start CIC.

Note- Anticholinergics Use:

Inhibits binding of acetylcholine to muscarinic receptors
Suppress involuntary bladder contractions.

Result :
bladder volume voided
micturition frequency
sensation of urgency
No. of urge incontinence episodes


6 Months of age:

Review by Paediatrician in clinic with renal tract USS done at local hospital prior to clinic +/- DMSA (radionucleide scan)

1) Is the child having discreet episodes of micturition or continuously dribbling?

2) Have there been any UTI’s ?

3) What is the stooling pattern ?

Indications for DMSA scan:

1) Febrile or recurrent UTI

DMSA can be done 8-12 weeks following a UTI to look for evidence of new scarring for children who continue to have UTI’s.

Note: DMSA needs to be done at a Maximum, once in 12 months

On-going follow up:

Continue subsequent clinic reviews with renal tract USS at local hospital 6 monthly till 1 year of age and then annually there -after.

More frequent follow up if any concerns such as

1) increasing dilation
2) recurrent UTI

Indications for referral to Paediatric Urology

1) Increasing renal dilatation despite adequate CIC and anti cholinergics
2) Recurrent UTI
3) Day time urinary incontinence persisting after 5 years of age

Indications for referral to Paediatric Nephrology
Bilateral parenchymal defects on DMSA

  1. Recurrent UTI
  2. Hypertension
  3. Proteinuria
  4. Impaired renal function

It is our aim to discuss the infants and children in the Yorkshire region with the above anomalies, by solving problems, sharing knowledge and expertise. Where there are concerns by local Paediatricians, a brief history and radiological images of a patient, can be forwarded for review by the urology team.

Review by Paediatrician in clinic with renal tract USS done at local hospital prior to clinic +/- DMSA (radionucleide scan)

Urodynamics is a group of tests or assessments typically prescribed by a paediatricians or urologists that allows them to look at how the lower urinary tract works. This assessment starts from birth with regular renal US scans and monitoring for adequate CIC.

A good history, USS with post void residual and urinary flow, form the first steps of urodynamic assessment and are non- invasive.

Timing of Invasive Urodynamics:

This is the decision of the Urology team. As the bladder dynamics can change with age, we do not feel that early invasive video urodynamic are relevant and do not add much to the available options. As evidenced earlier, management at this time is primarily with CIC and anticholinergics. If there are on-going problems

Invasive Urodynamics can be performed on children that are likely to need surgical intervention. This can be considered by the Urology team following referral.

Invasive Urodynamics is done after 5 years of age. But surgical procedure will usually not take place until the child is older. The Urologist will advise family on future plans.

Contact details

1. Urology nurse specialists: - 0113 392 6273/ 0113 392 6281
Craig Taylor (craig.taylor4@nhs.net)
Jill Hodsman ( jill.hodsman@nhs.net )
Jessica Meyer (jessica.meyer@nhs.net)
Urology nurses team (leedsth-tr.paediatricurologynurses@nhs.net)

2. Paediatric Urology Consultants
Junaid Ashraf (junaid.ashraf@nhs.net)-Locum Consultant
Ramnath Subramanian (ramnath.subramaniam@nhs.net)
Alexander Turner (alexander.turner@nhs.net)
Syed Salahuddin (salahuddin.syed@nhs.net)

3. Paediatric Nephrology Consultants
Kay Tyerman (kay.tyerman@nhs.net )
Eric Finlay (eric.finlay@nhs.net )
Palive Yadav (p.yadav@nhs.net)
Hitesh Prajapati (hitesh.prajapati@nhs.net )

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Spina Bifida Guidelines for Bowel Management


  1. Patients with spina bifida experiencing faecal incontinence are likely to have either inadequate sphincteric function, impaction with overflow, or both.
  2. Differentiation must be accurate to allow rational therapy. This may be achieved clinically and by using marker studies if needed. Please see Addendum 1 for protocol.
  3. Initial management of constipation is as per NICE guidelines www.nice.org.uk/guidance/cg99. Poor sphincteric function may however lead to incontinence if stools become too soft to control.
  4. Suppositories can be a useful adjunct but must be commenced with care. Education and supervision from an appropriate health care professional is needed, for example a clinical nurse specialist or continence nurse. Children must be fully disimpacted prior to starting suppositories for them to work. Support is required whilst children are on suppositories, particularly for the first few weeks.
  5. For those children with faecal incontinence, surgical involvement must be considered when they are of an age that they could tolerate either transanal irrigation, TAI or an antegrade colonic enema, antegrade continence enema, (ACE).

Indications for surgical referral:

1. As a neonate/infant:

a. Rectal prolapse which does not resolve with laxative treatment.
b. Incontinence leading to severe perianal excoriation which does not resolve with loperamide and/or barrier creams.
c. Constipation that does not respond with medical treatment (which includes all oral medication, glycerine suppositories, Bisacodyl suppositories, microlax enemas).

2. As a child:

a. Rectal prolapse which does not resolve with laxative treatment.
b. Faecal Incontinence or soiling.

i. If clinical evidence of impaction, suggest medical disimpaction. If symptoms persist suggest referral.

ii. If there is no suggestion this is impaction with overflow, and this is simply inadequate sphincter function, please refer when the child is 5 i.e. old enough for trans anal irrigation to be considered.

iii. If unclear, a transit study may help prior to referral. Please see Addendum 1 for protocol.

c. Trans anal irrigation is generally well-tolerated by children with spina bifida, particularly if perineal sensation is reduced. It can therefore be a very good treatment option. The child will need to be able to sit on the toilet for trans anal irrigation to be performed, please consider referral to local OT services to ensure all necessary aids / adaptations are in place to support this.

Addendum 1: Marker study

With the child still taking their usual medication, give 5 markers day 1 then repeat on day 2 and day 3 and day 4. Perform an AXR day 5 which should show anywhere from 0 to 20 markers. If transit is fast then 0-5 markers would be seen. If slow, more than 10 would be seen (transit >48hours). If >15 markers transit would be around 72 hours or more.

The distribution of the markers can help show where the hold up is. It is pretty easy to spot anorectal retention (i.e. if transit is slow and the markers are retained in the rectum). In this setting, titrate movicol until the stool is soft. If bowels are still not open on a daily basis, add in a stimulant. The choice between oral stimulant (e.g. senna) and rectal stimulant (e.g. 5mg bisacodyl suppository) should be largely that of the child and their family. Suppositories are more likely to be effective if anorectal retention is present since the stimulant is then being delivered to the right place. Suppositories need to be started with a willing child, with a willing nurse teaching willing parents, and into an emptied rectum.

If the transit is slow and markers are right round the colon (rather than just in the rectum) then this would be slow transit constipation (STC). Slow transit constipation requires stimulant laxatives for as the main drug, although the stools should be kept soft in the meantime. STC is less common.

Extra points to consider:

  • We have been using ?higher doses of Senna than previously
  • If the above measures still don't work, we’d ask the surgical CNS team involved to explain and discuss further the treatment options of TAI / ACE. When the patients and parents then come back to clinic, they are then already “informed” and they and their child can better make an informed choice between treatment options.
  • The option of Colostomy formation may also be considered for selected patients.


Colorectal CNS Nurse team: 0113 392 3826
Colorectal Surgeons Secretary: Pam Jajuha 0113 392 5831

Consultants and Clinical Nurse Specialists. Leeds Paediatric Colorectal Team
December 2018-

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Spina Bifida Orthopaedic Guidelines (excluding spinal deformity)

Infants and children with Spina Bifida should be seen by a Paediatric Orthopaedic Consultant for an overview at 6 weeks of age. The referral should be made by the paediatrician, using the referral form attached- Appendix 6


If the hips are dislocated or unstable on examination (before transfer or discharge) an urgent ultrasound scan should be performed as soon as possible, and a referral made to the Children’s Orthopaedic team by the neonatal team using the referral form attached.

Otherwise children need to be seen by one of the children’s orthopaedic team after spinal surgery usually within 6 weeks of age with a hip USS.

If the referral to the Paediatric Orthopaedics team is done in a timely manner, the team will arrange the scan on the same day of the clinic appointment prior to the clinical review.

ie the same as Newborn and Infant Physical Examination Programme (NIPE) guidelines for children who do not have spina bifida

Orthopaedic management of dislocated/unstable/stable but dysplastic hips in newborn children with Spina Bifida does not differ from the treatment of Developmental Dysplasia of the Hip (DDH).

Orthopaedic management of dislocated hips in older children with Spina Bifida is according to function/’level’.

Hip deformities are not usually painful in patients with spina bifida and on the whole, hip dislocation does not affect walking potential/ability and more broadly gait and function. (1)

There is moderate evidence that patients with Spina Bifida, level L4 and below, that have good quadriceps function and some gluteus medius function and have a unilateral hip subluxation or dislocation could benefit from a surgical intervention to reduce the hip [Morakis 2017]. These patients are typically home or community ambulators and a unilateral hip dislocation would cause significant gait asymmetry and decreased gait efficiency. This could affect their overall function.

There is no evidence that children with Spina Bifida level above L4 significantly benefit from hip relocation procedures on the contrary the risks of relocating the hips (including re-dislocation) are significant. (Table 1)

Quadriceps power in children with Spina Bifida should be at least grade 4 according to Medical Research Council (MRC) SCALE FOR ASSESSMENT OF MUSCLE POWER as follows:

0 - no movement
1 - flicker is perceptible in the muscle
2 - movement only if gravity eliminated
3 - can move limb against gravity
4 - can move against gravity & some resistance exerted by examiner
5 - normal power

(Ref: Medical Research Council. Aids to the investigation of peripheral nerve injuries. London: HMSO, 1975)

This assessment is made by a paediatrician or physio prior to discharge or transfer.

Table 1


Above L4 level
(Poor quads and gluteus medius)

Below L4 level
(Good quads with minimal gluteus medius strength)

Unilateral dislocation

Never reduce

Reduce/Consider reduction

Bilateral dislocation

Don’t reduce

Seldom reduce

Contractures around the hip should be managed to improve the perineal care, and sitting comfort regardless the level.

If a child with Spina Bifida sustains a fracture around the hip, x-ray and treat as normal.

Special attention should be given to the mechanism of injury and the potential for a Non-accidental injury (NAI)

If concerned please refer to Orthopaedic team.

It is important that the position of the feet is plantigrade so the child can stand or walk more easily and avoid neuropathic ulceration.

If the child is a non-walker the foot position still needs to be maintained so the feet can rest on the wheelchair foot supports and footwear can be used.

Serial casting and splintage may/will be required to maintain a good foot position.

In the newborn child with Spina Bifida with feet deformity the treatment is started early (2 weeks of age or as soon as the child is fit and well) in the Babyfeet clinic. Splintage will be arranged at the same time.

In the older children, splintage is managed by the local physiotherapist and/or orthotist.

The splints are usually worn throughout the day but each case will be discussed individually.

NB: Often those with deformity will have diminished/ absent sensation therefore, care with padding the splints and or cast is essential.

Early surgery for example tendon releases/transfers may be needed to maintain a plantigrade posture

Should the child’s foot position deteriorate or not respond to local physiotherapy intervention a referral to Leeds Children’s orthopaedics should be made for assessment using the referral form attached.

Newborn with Spina Bifida can present with hyperextended knee(s). These patients require serial casting to correct the deformity.
Patients with this deformity should be referred urgently to the Paediatric orthopaedic team for early serial casting, using the referral form attached.

Non-walkers will tend to have flexed knees consistent with wheelchair sitting.
Splintage is needed to avoid knee flexion deformities in walking children

Plaster casts:
Should a plaster cast be required to treat a knee(s) and/or foot/feet deformity, this will be done in the children’s orthopaedic clinic. The cast will be applied by the Consultant, or a Physiotherapist on his/her behalf, and the plaster technician.

The length of time a cast is required varies and each child will be treated individually to achieve the best results. Casts are sometimes changed one to two weekly or the cast can remain on post operatively for up to six weeks in some cases. All care and planned surgery will be discussed with the family and written information given.

Referrals for Orthopaedic Patients: Use referral form Appendix 7

Email: leedsth-tr.pto-spinabifida@nhs.net

  • Hip examination prior to discharge.
    If hip(s) clinically unstable or dislocated and not reducible urgent referral with USS and review in clinic at 2 weeks.
    If hip(s) stable on examination USS and review in clinic at 6 weeks.
    Please use referral form attached- Appendix 7
  • Knees examination prior to discharge. If abnormal, urgent refer.
    Please use referral form attached. Appendix 7
  • Feet examination prior to discharge. If abnormal, urgent referral.
    Please use referral form attached.- appendix 7

Contact details:

Children’s Orthopaedic Consultants can be contacted via their Secretaries:
Mrs Helen Bryant, Secretary Mrs Ruth Turner Tel 0113 392 3819
Mrs Laura Deriu, Secretary Mrs Nita Howley Tel 0113 392 5713
Mr Mohammed Sabouni, Secretary Mrs Janet Newland Tel 0113 392 6697

Children’s Orthopaedic Clinical Nurse Specialists;
Eileen Cullen: Mobile: 07920478091 Monday to Thursday.
Charlotte Palfreeman: Tel: 07789174331 Tuesday to Friday.
Office Tel: 0113 3928570
Email: leedsth-tr.pto-spinabifida@nhs.net

Mrs Helen Bryant, Mrs Laura Deriu, Mr Mohammed Sabouni,
Consultants Paediatric Orthopaedics
Revised Jan 2019

For any further revisions, please contact: Mrs Laura Deriu: l.deriu@nhs.net

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Neurosurgical Management in New-born period

On admission:
Ensure the spinal defect is covered with moist dressing at all times. This should be under cling film. We use ‘Intrasite Conformable’- Stored in Surgical cupboard on neonatal unit

Note: Do not put cling film directly over the defect as this can cause damage and trauma when it is being removed.


Pre-operatively Open Defects:

There is no routine need for pre-operative antibiotics, for open defects, unless indicated for other reasons.

MRI- should ideally be done pre- operatively if the patient has ventricularmegaly that will require a shunt at the same time as the back closure. Note: If MRI is done pre op then there is no need for cranial Ultrasound preop.

If MRI is not done then a Cranial Ultrasound needs to be done Pre-operatively.

MRI should be done before discharge. Neurosurgeons need a baseline MRI for all Spina Bifida patients.

Closed Defects:

Patient needs a Cranial Ultrasound as an inpatient.
The MRI of Head and Spine can be booked as an outpatient

All follow up and referrals as per open defect. Neurosurgical follow up at 6-8 weeks

Post- Operative Wound Care:
The neuro-surgeons have agreed that once patient stable in theatre, Spina bifida patients should return to the ward nursed prone.

On-going wound management:

1. If plastic surgeons have been involved with back closure, they will direct all wound management plans. They usually prefer to change their own dressings. Contact the Plastic registrar if any concerns about the wound or dressing. Do not remove the dressing. Nurse the patient prone at all times, even for feeds, until the plastic surgeons direct otherwise.

2. If wound is closed by the Neuro-surgeons:
Nurse the patient prone as we already do. The patient can come out of the cot for feeds and return to prone position in between. If neuro surgeons closed the back, they are happy for nursing staff to change the dressing if it becomes very soiled.

Potential issues after Insertion of Shunt:

  1. Shunt Infection
  2. Blocked Shunt

For further reading and information, visit- www.shinecharity.org.uk

- Ensure that the patient has daily Head circumference measurement and documented, in the immediate post op period. Or as directed by the neuro-surgeons. Then follow guidance as per follow up plans in (Neurosurgical Spina bifida Care Pathway).

If there are any concerns or symptoms of possible problems contact :
Hydrocephalus nurse Specialist- Louise Higgins (0113 3928046) or ward L52 for advice (01133927452).

  • Patents with a shunt insitu, that have issues, get DIRECT ACCESS to the Neurosurgical ward L52 at Leeds Children’s Hospital. The parent/Child or health professional need to ring the ward first on 0113 3927452.

Signs of possible Shunt infection:

Shunt infections can lead to shunt blockage. The GP could see the patient to out-rule other causes of infection in the first instance eg urine checks. Urine infections can be very common in patients with Spina Bifida.

  1. High Temperature of 38C or above with no obvious underlying infection
  2. Out rule possible urine infection- Get GP to check urine sample
  3. Get medical advice from Neurosurgical team/Hydrocephalus nurse
  4. Redness (Tracking) or tenderness along line of shunt
  5. Vomiting
  6. Headache
  7. Tummy pain
  8. Irritability or sleepiness in infants

Signs of shunt Blockage:

  1. In infants: Head circumference (HC) across full centile line. Ensure HC documented and reviewed from a centile chart.
  2. Headaches
  3. Vomiting
  4. Lethargy
  5. Irritability
  6. Periods of confusion
  7. Decreased school performance
  8. Seizures

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Record: 4278

To provide evidence-based recommendations for appropriate diagnosis, investigation and management of the

  • Urinary and intestinal tract,
  • Orthopaedic interventions,
  • Neurosurgery, hydrocephalus
  • Therapy services
  • Professional communication
  • Parent information
Clinical condition:

Open and closed spina bifida

Target patient group: Neonatal and children under 16 years
Target professional group(s): Secondary Care Doctors
Secondary Care Nurses
Adapted from:

Evidence base

Orthopaedic pathway
www.paediatricpearls.co.uk for clinical or educational reasons only.
Medical Research Council. Aids to the investigation of peripheral nerve injuries. London: HMSO, 1975)

Bowel management for constipation
NICE guidelines www.nice.org.uk/guidance/cg99

Open and closed spina bifida

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Approved By

Trust Clinical Guidelines Group

Document history

LHP version 1.0

Related information

Appendix 1

Discharge checklist for Neurosurgical infants

Appendix 2. Spina Bifida patients medical discharge summary guide

Guide for Discharge Letter

This information is provided to give you some guidance of what is most relevant spina bifida information to include in the discharge summary. The receiving medical teams and all other professionals would really appreciate the attention to providing the following details

NB. Please refer to ‘Discharge check list’ (at patient’s bed side or in patients notes) for all referrals and follow up information. This check list should go with the discharge letter to the local Paediatrician for their information.


  • Earlier referral should already have been done to local Paediatrician
  • Local paediatrician responsible for leading and coordinating all care so needs as much information as possible on discharge.
  • Ensure a copy of the discharge check list and List of professionals involved in care are sent with badger letter and given to parents.

**Ask the local Paediatrician to request Renal US and medical follow up locally 6-8 weeks post discharge.**


  • Date of spinal surgery, explain operation note.
  • VP shunt placed? Date? Sutures, ?dissolvable / or to be removed when?
  • Were plastics involved? What are follow up plans?
  • Head Circumference measurement now, centile
  • HC to be measured by HV weekly for at least 12 weeks after discharge.
  • Is there Arnold Chiari malformation?
  • Hydrocephalus nurse specialist will follow up and support parents on discharge.
  • Any concerns in community contact Hydrocephalus nurse or ring Ward 52 for advice (Neurosurgical Ward)
  • Results of CUSS, MRI, CT, explain the results and future plan. Please copy and paste report and add to badger summary
  • Wound management, dehiscence - or clean and dry?
  • Examination assessment, tone and movement.


  • Hip examination prior to discharge.
    If hip(s) clinically unstable or dislocated and not reducible urgent referral with USS and review in clinic at 2 weeks.
  • If hip(s) stable on examination USS and review in clinic at 6 weeks.
    Please use referral form attached.
  • Knees examination prior to discharge. If abnormal, urgent refer.
    Please use referral form attached.
  • Feet examination prior to discharge. If abnormal, urgent referral.
    Please use referral form attached.


  • RUSS, date, result, plan for future- copy and paste report of renal US onto badger discharge letter. Urology referral only if there is an abnormal renal ultrasound before discharge.
  • Paediatrician to refer to Urology if any problems arise
  • Catheterised- How frequently- it will be at least once per day.
  • If there is renal pathology - Prophylactic Trimethoprim may be needed, individual discussion with urology team and microbiology.
  • Normal renal U/S- NO prophylactic antibiotics required.
  • Local paediatrician to monitor patient’s renal situation. **Ask the local Paediatrician to request Renal US and follow up locally 6-8 weeks post discharge.**


  • Include result of ophthalmology review. Future plan or if follow up needed ( this is decision of neurosurgeon)?

Bowel issues

  • Ensure you mention if there are issues with stooling- increased frequency. Frequent staining. Has this led to perianal excoriation? Does the infant have barrier creams prescribed? Are they on any laxatives?

Send referrals to:

  • Community Paediatrician (see list of hospital addresses)
  • Physiotherapy / occupational Therapy
  • Urology Team- X 3 clinics /year for Leeds Patients
    - joint urology/bowel clinic when patient is near school age,
    Mr Sugarman and Urology will discuss each patient.
  • Paediatric Orthopaedic Team - Mrs Bryant, Mrs Deriu, Mr Sabouni
    Email: leedsth-tr.pto-spinabifida@nhs.net
    Fax 0113 3922599
    Phone 0113 3928570
  • Ophthalmology - Mr Long- Secretary- 0113 206663
  • Include a cc list for everyone involved in care.

Appendix 3

Parents Red Book - Top to Toe Information

Appendix 4

Audit form template

Appendix 5

List of Health professionals involved in care

Appendix 6

Referral form for Leeds Community teams ICAN

Appendix 7

Referral form for Orthopaedic Team

Appendix 8 - Contact List for Community Paediatricians


York and Scarborough  -  Dr Ianthe Abbey
Hull & East Yorkshire  -  Dr Jo Preece
Leeds  -  Folasade Rotimi
Bradford  -  Dr Kate Wildig
Halifax  -  Dr Karen Schwartz
Airedale  -  Dr Gary Savill
Harrogate  -  Dr Ian Cannings
Mid Yorkshire  Dr Bryoni Scott

LS 7 3EX
Office no:0113 8435710
Refer Via:

Community Paediatric address details: 

Dr K Wildig
Extension Block SLH
Bradford Teachings Hospitals NHS Foundation Trust
Little Horton Lane
Bradford, BD5 0NS
01274 365584

Community Paediatrics
Airedale NHS Foundation Trust
Skipton Road, Keighley
West Yorkshire
BD20 6TD
01535 292830

Community Paediatrics
Dewsbury & District Hospital
Halifax Road
WF13 4HS
0844 8118110 or 01924 541000

Community Paediatrics
Pinderfields Hospital
Aberford Road
Wakefield, WF1 4DG
0844 8118110 or 01924 541000

Community Paediatrics
Pontefract Hospital
Friarwood Road
Pontefract, WF8 1PL
0844 8118110 or 01924 541000

Community Paediatrics
Scarborough Hospital
Woodlands Drive
Scarborough, YO12 6QL
01723 368111

Community Paediatrics
York Teaching Hospital NHS Foundation Trust.
Wigginton Road
York YO31 8HE
01904 631313

Community Paediatrics
The Children’s Centre
70 Walker Street
Hull, HU3 2HE
01482 585760

Community Paediatrics
Harrogate District Hospital
Lancaster Park Road
Harrogate, HG 2 7SX
01423 542497

Community Paediatrics
Calderdale NHS Trust
West Yorkshire
01422 357171

Community Paediatrics
Huddersfield Royal Infirmary
Acre Street
Huddersfield, HD3 3EA
01484 342000


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Glossary of Terms

NICU - Neonatal intensive care
NHDU -Neonatal High dependency unit
CNS - Clinical nurse specialist
RUSS - Renal ultrasound scan
OT -Occupational therapy
CCN -Childrens community nurse
UTI -Urinary tract infection
MCUG -Micturating cystourethragram
DMSA -Dimercaptosuccinic acid
ACE -Antegrade colonic enema
MDT -Multidisciplinery team
HC -Head circumference
MRI - Magnetic resonance imaging
OFC - Occiput Frontal Circumference

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Equity and Diversity

The Leeds Teaching Hospitals NHS Trust is committed to ensuring that the way that we provide services and the way we recruit and treat staff reflects individual needs, promotes equality and does not discriminate unfairly against any particular individual or group.