Pregnancy, Childbirth and Puerperium in Women with Spinal Cord Injury

Abstract

This guideline on pregnancy, childbirth and puerperium for women with spinal cord injury (SCI) presents general issues relating to the wish to have children and pregnancy in the context of SCI. The guideline was developed by the German-speaking Medical Society for Paraplegia (Deutschsprachige Medizinische Gesellschaft für Paraplegiologie, DMGP) and the German Society for Gynecology and Obstetrics (Deutsche Gesellschaft für Gynäkologie und Geburtshilfe, DGGG). As there were no generally available evidence-based guidelines about this complex set of problems, this new guideline aims to standardize procedures using a structured consensus-of-experts approach. The aim is to establish general interdisciplinary standards and provide practical assistance for the care and counseling of women with SCI who wish to have children/are pregnant and thereby close the identified gaps in medical care, information, interdisciplinary cooperation and research.

Keywords

guideline - pregnancy - spinal cord injury - interdisciplinary care

I  Guideline Information

Guidelines program of the DGGG, OEGGG and SGGG

More information on the program is available at the end of the guideline.

Citation format

Pregnancy, Childbirth and Puerperium in Women with Spinal Cord Injury. Guideline of the DGGG and DMGP (S2k-Level, AWMF Registry No. 179/002, August 2024. Geburtsh Frauenheilk 2025; 85: 265–281

Guideline documents

The complete German-language version of this guideline together with a list of the conflicts of interest of all the authors are on the homepage of the AWMF: https://register.awmf.org/de/leitlinien/detail/179-002

Guideline authors

See [Tables 1] and [2].

Table 1 Lead and/or coordinating guideline author.

Author	AWMF medical society
Dr. Ines Kurze	DMGP
Prof. Dr. Markus Schmidt	DGGG

Table 2 Contributing guideline authors.

Author Mandate holder	DGGG working group/ AWMF/non-AWMF medical society/ organization/association
Mandate holders
Prof. Dr. Ute Lange	German Society for Midwifery Science (Deutsche Gesellschaft für Hebammenwissenschaft, DGHWi)
PD Dr. Ulrich Mehnert	German Neurological Society (Deutsche Gesellschaft für Neurologie, DGN)
Doris Knorr	German Midwifery Association (Deutscher Hebammenverband, DHV)
PD Dr. Gesa Cohrs	Spina Bifida and Hydrocephalus Working Group (Arbeitsgemeinschaft Spina Bifida und Hydrocephalus, ASBH)
Amke Baum	Support Association for Paraplegics in Germany (Fördergemeinschaft der Querschnittgelähmten in Deutschland)
Barbara Schilcher	D-A-CH Association of Urotherapie (D-A-CH Vereinigung der Urotherapie e. V.)
Dr. Marlies Onken	Pharmacovigilance and Counseling Center for Embryonic Toxicology at Charité University Medical Center Berlin (Pharmakovigilanz- und Beratungszentrum für Embryonaltoxikologie der Charité – Universitätsmedizin Berlin)
Authors
Dr. Kai Fiebag	Neuro-urology
Dr. Anke Jaekel	Neuro-urology
Dr. Sue Bertschy	Healthcare research
Simone Kues	Psychology/patientʼs perspective

The following medical societies/working groups/organizations/associations wanted to contribute to the guideline text and nominated representatives to attend the consensus conference.

II  Guideline Application

Purpose and objectives

The guideline on pregnancy, child birth and puerperium for women with spinal cord injury (SCI) presents general issues relating to the wish to have children and pregnancy in the context of SCI. As there were no generally available evidence-based guidelines about this complex set of problems, this new guideline intends to standardize procedures. The aim is to establish general interdisciplinary standards and provide practical assistance for the care and counseling of women with SCI who wish to have children/are pregnant and to close the identified gaps in medical care, information, interdisciplinary cooperation and research [1], [2].

Target areas of care

Ambulatory and (short-term) in-patient care

Target user groups/target audience

This guideline addresses paraplegic and neuro-urological as well as gynecological and obstetric aspects which affect the utilization and quality of care. The guideline is therefore aimed at all professional staff involved in the care of women with spinal cord injury.

Adoption and period of validity

The validity of this guideline was confirmed by the executive boards/representatives of the participating medical professional societies, working groups, organizations, and associations as well as the boards of the DGGG and the DGGG Guidelines Commission in August 2024 and was thereby approved in its entirety. This guideline is valid from 14 August 2024 through to 13 August 2029. Because of the contents of this guideline, this period of validity is only an estimate. The guideline can be reviewed and updated earlier if urgently necessary. Similarly, if the guideline still reflects the current state of knowledge, its period of validity can be extended.

III  Method

Basic principles

The method used to prepare this guideline was determined by the class to which this guideline was assigned. The AWMF Guidance Manual (version 1.0) has set out the respective rules and requirements for different classes of guidelines. Guidelines are differentiated into lowest (S1), intermediate (S2), and highest (S3) class. The lowest class is defined as consisting of a set of recommendations for action compiled by a non-representative group of experts. In 2004, the S2 class was divided into two subclasses: a systematic evidence-based subclass (S2e) and a structural consensus-based subclass (S2k). The highest S3 class combines both approaches.

This guideline was classified as: S2k

Grading of recommendations

The grading of evidence based on the systematic search, selection, evaluation, and synthesis of an evidence base which is then used to grade the recommendations of the guideline is not envisaged for S2k guidelines. The individual statements and recommendations are only differentiated by syntax, not by symbols (see [Table 3]).

Table 3 Grading of recommendations (based on Lomotan et al., Qual Saf Health Care 2010).

Description of binding character	Expression
Strong recommendation with highly binding character	must/must not
Regular recommendation with moderately binding character	should/should not
Open recommendation with limited binding character	may/may not

Statements

Expositions or explanations of specific facts, circumstances, or problems without any direct recommendations for action included in this guideline are referred to as “statements.” It is not possible to provide any information about the level of evidence for these statements.

Achieving consensus and level of consensus

At structured NIH-type consensus conferences (S2k/S3 level), authorized participants attending the session vote on draft statements and recommendations. The process is as follows. A recommendation is presented, its contents are discussed, proposed changes are put forward, and all proposed changes are voted on. If a consensus (> 75% of votes) is not achieved, there is another round of discussions, followed by a repeat vote. Finally, the level of consensus is determined, based on the number of participants (see [Table 4]).

Table 4 Level of consensus based on extent of agreement.

Symbol	Level of consensus	Extent of agreement in percent
+++	Strong consensus	> 95% of participants agree
++	Consensus	> 75 – 95% of participants agree
+	Majority agreement	> 50 – 75% of participants agree
−	No consensus	< 51% of participants agree

Expert consensus

As the term already indicates, this refers to consensus decisions relating specifically to recommendations/statements issued without a prior systematic search of the literature (S2k) or where evidence is lacking (S2e/S3). The term “expert consensus” (EC) used here is synonymous with terms used in other guidelines such as “good clinical practice” (GCP) or “clinical consensus point” (CCP). The strength of the recommendation is graded as previously described in the chapter Grading of recommendations but without the use of symbols; it is only expressed semantically (“must”/“must not” or “should”/“should not” or “may”/“may not”).

IV  Guideline

1  Introduction

There are around 140 000 people living with paraplegia in Germany [3]. A comparison of the gender composition of persons with SCI showed that the percentage of women with SCI in Germany is significantly lower (women 25.2%, men 74.8%). The annual incidence of SCI in women is 7.5/1 million [4]. According to an explorative observational study of 8 paraplegia centers in Germany carried out in 2017, 65/1475 persons with paraplegia who visited the centers were women aged between 18 and 40 years (4.4%) and 62/1475 were women aged between 41 and 50 years (4.2%) [5]. Studies from the USA and Switzerland report that an estimated 14 – 18% of women of child-bearing age give birth to children after suffering a spinal cord injury [6], [7], [8]. Women with SCI give birth five years later on average compared to the general population. During pregnancy, women with SCI are increasingly likely to seek medical help in ambulatory and inpatient medical facilities [1], [3]. Antenatal complications such as increased spasticity (38%) and urinary tract infections (24%) are common [9].

Inpatient hospitalization of pregnant women with SCI before the birth is about five times more common than in the normal population (73% vs. 14%), with almost half of all pregnant women with SCI affected [10]. Pyelonephritis is the most common reason for admission to hospital [10], [11]. Other indications for admission to hospital as an inpatient include hypertension, pneumonia, preeclampsia, preterm labor and tachycardia [11].

The challenges in providing appropriate ambulatory and inpatient care to women with SCI are very clear to the attending medical staff [6]. The effective management of treatment requires quite specific expertise in obstetrics and gynecology, spinal cord medicine, and neuro-urology. The ideal situation is if there are close connections to a paraplegia center where an interdisciplinary and interprofessional team is already providing care to the patient before the start of pregnancy and can contact the appropriate gynecologists and obstetricians at an early stage at the start of pregnancy. It is absolutely essential that the patient with SCI is actively involved in all treatment decisions as patients with SCI often have high levels of health competence [12].

All recommendations below reached a strong consensus.

1  Summary of recommendations and statements

2.1  Medical care and complications during pregnancy in women with SCI

2.1.1  Bladder infections

Bladder management must be repeatedly reviewed over the course of the pregnancy and must be adjusted where necessary, for example by: shortening the intervals between catheterizations in individual cases: permanent urinary diversion, interval between changes: individual, max. 4 weeks

Urinary diversion by means of a ureteral stent or nephrostomy should be done in cases with urine flow disorders if the following criteria are present: Newly occurring and/or progressive urinary retention of the renal pelvis (diagnosed on ultrasound) combined with flank pain, renal function deterioration, fever, increased spasticity and/or elevated inflammatory parameters which cannot be attributed to another cause.

2.1.2  Autonomic dysreflexia

Stimuli/stimulation of the paralyzed area (contractions, manipulations before/during delivery, vaginal/rectal examination, cesarean section) may trigger autonomic dysreflexia.

Caution: A rapid rise in blood pressure to very high levels can occur very quickly in the context of autonomic dysreflexia without the patient noticing. Pregnant women with a level of paralysis above T6 or a known history of AD with a lower level of paralysis must be monitored during situations likely to provoke AD.

Treatment of autonomic dysreflexia

1. Eliminate the cause

Eliminate the stimuli triggering AD (discontinue manipulations, empty the bladder or bowel). During contractions/childbirth: epidural catheter (EDC) or patient-controlled epidural analgesia (PCEA) with blocking of the thoracic nerves up to and including T10 (see 3.1).

2. Antihypertensive medication

If the AD persists despite carrying out measures such as those described under point 1:

The preferred medication in all stages of pregnancy is oral nifedipine at an initial dose of 5 (10) mg, which can be repeated if necessary after 20 min. Alternatively, urapidil is the 2nd choice medication with an initial dose of 6.25 mg administered slowly i. v., followed by 3 – 24 mg/h using a perfusor. Emergency medication: 5 mg dihydralazine slowly administered i. v., followed by 2 – 20 mg/h using a perfusor. Acute reduction of blood pressure should be carried out under CTG monitoring once the infant is viable [13].

If the risk to maternal vital signs continues, the urapidil dose should be slowly escalated to 10 – 50 mg i. v. or a fast acting nitroglycerin medication should be administered.

The diagnosis of autonomic dysreflexia must be carefully differentiated from preeclampsia ([Table 5]).

Table 5 Differential diagnosis of autonomic dysreflexia/preeclampsia.

	Autonomic dysreflexia	Preeclampsia
Level of spinal cord injury	Usually above the T6 spinal segment, rarely below	Irrespective of the level of the spinal cord injury
Blood pressure	Very rapid, extremely high increase (within just a few seconds)	Typically presents as a slow continuous increase; rapid increase within just a few hours is possible in rare cases
Heart rate	Usually bradycardia; tachycardia in the early stages	Heart rate is usually normal
Proteinuria	No	Yes (> 300 mg/24 h)
Clinical presentation	Flushing, sweating, goose bumps, pounding headache, increased reflexes	Edemas, continuous headache, blurred vision, upper abdominal pain, hyperreflexia
Serum values	Untypical	Can occur simultaneously with HELLP syndrome (uric acid levels ↑, transaminases ↑, thrombocytes ↓, haptoglobin ↓)

2.1.3  Bowel function disorders

Bowel management must regularly reviewed and adapted to the individual situation due to possible changes in stool consistency, altered colonic transit times, and reduced mobility during pregnancy. If necessary, assistance to carry out bowel management should be organized. A women with coprostasis and retention of stools over several days should be admitted to hospital as an inpatient to undergo controlled, more intensive purgative measures.

2.1.4  Skin changes

Regular checks of the skin and, if necessary, seat pressure measurements must be carried out (2 – 4 times per week from the 3rd trimester of pregnancy) and the respective aids must be adapted if required.

2.1.5  Weight gain

In addition to weight checks carried out every 4 weeks in accordance with the Maternity Directive guidelines, paraplegic pregnant women must undergo regular check-ups to monitor paraplegia-related and neuro-urological issues, with check-ups carried out in a paraplegia center at least twice in the 2nd and 3rd trimester of pregnancy.

2.1.6  Changes in mobility/balance

To ensure mobility, alternatives must be provided early on, e.g., transfer board, mobile lifter or an (additional) assistant.

2.1.7  Thrombosis

As thrombosis is more common in pregnant women with SCI compared to women without SCI, thrombosis prophylaxis must provided which takes account of the risk factors (see Section 2.6. in the long version of the guideline).

2.1.8  Breathing

As the risk of respiratory insufficiency in women with tetraplegia or higher paraplegia increases in the 2nd and 3rd trimester of pregnancy, individual physiotherapy-supported breathing therapy should be started early as a countermeasure. The use of pressure breathing therapy units, mechanical insufflation-exsufflation devices, and non-invasive breathing/ventilation during pregnancy should be considered.

2.1.9  [Table 6] provides an overview of possible complications which can arise over the course of the pregnancy and their management

Table 6 Management of complications during the course of pregnancy.

	1st trimester	2nd trimester	3rd trimester	Management
Autonomic nervous system	Autonomic dysreflexia	Autonomic dysreflexia	Autonomic dysreflexia	Eliminate trigger stimuli Elevate the upper body Antihypertensive medication Peripartum EDA if necessary
Urinary tract	Urinary tract infections Urinary incontinence	Urinary tract infections Urinary incontinence Pyelonephritis Formation of urinary calculi	Urinary tract infections Urinary incontinence Pyelonephritis Formation of urinary calculi	UTI prophylaxis after pyelonephritis More frequent catherization or self-catheterization, if necessary (Temporary) indwelling catheter, if necessary
Bowels	Constipation	Constipation	Constipation Affects defecation frequency due to additional pressure on the bowels Increased difficulty in positioning for defecation	Adapt diet/flud intake Adjust bowel management using medications based on consistency of stools Assistance may be required
Skin		↑ Risk of pressure ulcers	↑ Risk of pressure ulcers	↑ shift weight/ease pressure Inspect skin regularly ↓ Transfers Adapt aids (cushions, mattress, shower chair, lifting device if necessary)
Weight		↑ Weight	↑ Weight	Balanced diet
Mobility			Reduced mobility and altered balance due to changes in body proportions Tiredness, less resilient	Adapt settings on manual wheelchair (position of the axle, backrest, add support wheels if required) Poss. (temporary loan of) powered wheelchair or other form of motorized support for manual wheelchair (e.g.: WheelDrive, Smoov, etc.) may be useful
Spasticity			↑ Spasticity	Intensive physiotherapy for contracture prophylaxis Avoid spasticity triggers
Lung function			Reduced breathing volume and vital capacity Dyspnea Reduction in ability to produce effective cough	Respiratory therapy/physiotherapy Breathing support using positive pressure ventilation, use of CPAP or non-invasive ventilation (NIV) Take secretolytic drugs
Daily activities			Less independence during transfers, getting dressed, etc.	Practice carrying out daily activities with a simulated baby bump prior to pregnancy (ball placed under T-shirt) Allow for more time Organize or adapt aids

3  Counseling

3.1  Contraception counseling

Recommended contraception for women with SCI: desogestrel 75 microgram preparations hormonal intrauterine pessaries progestin implants in individual cases: combined contraceptives

3.2  Counseling prior to conception

Preconception counseling should be provided by a gynecologist in close consultation and coordination with the treating paraplegia specialist or neuro-urologist. Direct contacts to a paraplegia center must be forged early on (see check list in [Table 7])

Table 7 Check list prior to conception.

Prior to conception:

1. Neurological and orthopedic stability

2. Review/pause medications, if necessary

3. Folic acid supplementation

4. Bladder management

5. Bowel management

6. Make note of any implants

Pregnancy:

7. Thrombosis prophylaxis

8. Adapt aids

9. Prevent pressure ulcers

10. Caution: autonomic dysreflexia

11. Caution: bladder infections

12. Training: to recognize contractions and complications

13. Adjust planned date of delivery

In addition to folate-rich foods, folic acid substitution must be started 2 – 3 months prior to conception if possible and should be continued throughout the first trimester of pregnancy. Dose for women with paraplegia: 0.4 mg folic acid/d. Dose for women with spina bifida or neural tube defects: 5 mg folic acid/d.

4  Pregnancy planning

4.1  Medication therapy

In principle, the gynecologist or paraplegia specialist must monitor the indications for therapeutic medications regularly and carefully. Independent advice is available from Charité Embryotox, tel. [phone] or www.embryotox.de

4 – 8 urine tests per week should be carried out and should include culturing of catheter urine. Ultrasound of the urinary tract should additionally be carried out as well as lab tests where necessary.

Test-approporiate antibiotic therapy should be administered to paraplegic pregnant women to prevent pyelonephritis if significent bacteriuria and leukocyturia is present despite the woman being asymptomatic. The aim must be to prevent infection-induced preterm birth, especially as pyelonephritis symptoms may be reduced or absent due to paraplegia.

In principle, longer-term (7 – 10 d) antibiotic therapy in higher doses must be administered. Short-term therapy must not be used to treat pregnant women with SCI.

Pregnant women with SCI should not be given long-term antibiotic prophylaxis as the evidence for this is lacking and there is a risk of worsening resistance. Long-term antibiotic prevention should be initiated after pyelonephritis or in the event of recurrent urinary tract infections.

The decision to initiate antibiotic therapy must be made on an individual basis and must be weighed up very carefully. Urine culture with an antibiogram must always be carried out before initiating antibiotic therapy. After pyelonephritis treatment has concluded, a urine culture must be obtained to confirm the success of therapy.

Beta-lactam antibiotics are the 1st choice medication. Penicillins and cephalosporins are the best-studied antibiotics including in combination with beta-lactamase inhibitors.

Nitrofurantoin should be the 2nd choice antibiotic. Toward the end of pregnancy, treatment with nitrofurantoin should be avoided, if possible.

Anticholinergics should be discontinued if vesical pressures are tolerable, especially in the 1st trimester of pregnancy. But anticholinergic therapy is possible, preferably with oxybutynin, if strict conditions are met. Alternative: botulinum toxin injection into the detrusor vesicae muscle prior to conception.

Antispasticity drugs should be gradually reduced and discontinued. Short-term use of diazepam is possible.

Implantation of a medication pump for intrathecal drug administration before the start of pregnancy may be considered in women with spinal spasticity which is hampering care and treatment before pregnancy and cannot be adequately managed with medication or is refractory to therapy (see also Section 2.4.4. in the long version of the guideline).

Paracetamol is the first choice analgesic and antipyretic agent in all stages of pregnancy. Maximum daily dose: 3 g.

Plant-based laxatives such as anthraquinone derivatives (senna, rhubarb extracts, alder buckthorn bark, aloe), paraffin oil and castor oil should not be used.

High-fiber foods, if necessary with the addition of lactulose as a stool softener, should be used to support intestinal passage. Sodium picosulfate may be used briefly in cases with persistent constipation.

Digital stimulation and digital evacuation, if necessary, should be primarily used to empty the rectal ampulla. CO2-releasing suppositories are harmless and may be used to support rectal emptying.

Hyperosmolar saline inhalation (NaCl 5 – 10%) and adequate fluid intake is the 1st choice method for secretolysis. The use of bronchodilators and secretolytic drugs are subject to strict indications and the benefits and risks must be carefully weighed up. The drugs of choice are salbutamol and ipratropium bromide or ambroxol and acetylcysteine. Hypoxia and shortness of breath must be avoided.

Selected relevant medications are listed in [Table 8].

Table 8 Overview of selected relevant medications.

	Medication	Pregnancy
Antihypertensives	alpha-methyldopa selective β-1 receptor blockers (metoprolol) nifedipine diuretics ACE inhibitors angiotensin AT1 receptor antagonists	1st choice medication may be used may be used contraindicated contraindicated contraindicated
Anticoagulants	cumarin derivatives heparins/low molecular weight heparins direct oral anticoagulants (DOACs)	contraindicated may be used contraindicated

4.2  Implants

Despite a lack of studies, especially on sacral neuromodulation (SNM) in paraplegic pregnant women, the guideline authors recommend continuing with sacral neuromodulator activation during pregnancy.

If the pregnant woman has an artificial urinary sphincter, it must always be deactivated before vaginal delivery or prior to placement of a permanent transurethral catheter. Simply emptying the cuff is not sufficient. As meaningful data and literature are lacking and because of the potential injury to the urethra, bladder and the implanted sphincter, primary cesarean section in a pregnant woman with an artificial urinary sphincter may be indicated.

4.3  Thrombosis prophylaxis

General thrombosis prophylaxis should be initiated in week 28 of gestation and continued until 6 weeks after the birth. If additional risk factors are present, prophylaxis should be maintained during the entire time of the pregnancy and puerperium until 6 weeks post partum. Low molecular weight heparins (LMWH) are considered the medication of choice. Additional measures include: regular elevation of the legs, cold showers of the legs, increased passive or active movements, and wearing support stockings.

5  Pregnancy and childbirth

If the pregnant woman is at risk of autonomic dysreflexia, extended monitoring in the delivery room including close monitoring of maternal vital signs and extended continuous monitoring as long as the epidural catheter (EDC) or patient-controlled epidural analgesia (PCEA) are in place and must be continued for 48 h.

Even though SCI is not an indication per se for cesarean section, the situation of the individual pregnant woman, her wishes, prospects and risks should be discussed during an individual discussion to plan the birth in the maternity hospital.

SCI in a pregnant woman is not, per se, an indication for cesarean section.

6  Care during puerperium

If use of a medication contraindicated for lactating women is urgently indicated, the mother should be advised to discontinue breastfeeding ([Table 9]).

Table 9 Choice of medications during lactation.

	Medication	Breastfeeding
* Only if the fetus is closely monitored
Anti-spasticity medication	Baclofen	Must be not used
	Diazepam	Relative contraindication, short-term use of single doses possible
Anticholinergics	Oxybutynin (1st choice)	Use under strict medical supervision
	Trospium chloride, propiverine	Use under strict medical supervision
	Botulinum toxin	Must not be used
Pain medication	Paracetamol	1st choice medication
	Ibuprofen	1st choice medication
	Metamizole	Avoid if possible, individual doses possible
Antiepileptics	Gabapentin*	Monotherapy possible
	Pregabalin*	Low dose monotherapy possible

Conflict of Interest

The conflicts of interest of all the authors are listed in the long German-language version of the guideline.

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Publication History

Received: 14 November 2024

Accepted: 25 November 2024

Article published online:
05 March 2025