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Pregnancy in JHS and EDS

Posted By Donna Wicks, October 1, 2012

Pregnancy and childbirth is often a completely normal experience for women with JHS.

It is, however, important to be aware of a number of issues that might cause problems. Being alert to these can reduce the risk of them arising and speed up the interventions should they occur so that complications or difficulties for both mother and child may be minimised.

The first section below out lines the sorts of medical issues that need to be considered. The section following that describes some of the more common musculoskeletal issues that arise during and after pregnancy.

Pregnancy and Medical Concerns in JHS and EDS

Unlike the vascular form of the Ehlers-Danlos Syndrome (EDS), formerly EDS Type IV, the Joint Hypermobility Syndrome (JHS), and EDS–Hypermobility Type (formerly EDS III) (EDS-HM) are not associated with heart disease or major hazards during pregnancy and labour.

Several considerations that should be borne in mind, which are listed here:

  • There may be an increase in the level of pain experienced, spinal and joint pain in particular, during the course of the pregnancy.
  • Although not common there may be early loss of the fetus due to rupture of membranes or bleeding.
  • There is a tendency to early dilatation of the cervix and to premature rupture of the membranes and hence premature labour and delivery. Cervical dilatation may respond to rest and support sutures.
  • You could experience a more rapid labour.
  • There is no absolute indication for Caesarean section; the benefits and risks are a clinical judgement, not least wound healing and risk of bleeding.
  • Due to a possible resistance to the effects of local anaesthetics you may find that you gain little or no benefit from epidural anaesthesia or other local painkillers given if you have an episiotomy or tear.
  • Any tear or episiotomy wound may heal slowly or healing may be impaired.
  • Any surgery required will need to take the possible effect on healing into account.
  • You may find feeding the baby more difficult and caring for the baby more tiring than other mothers.
  • It is important to ensure that all post-natal exercises are performed with greater care taking any individual requirements into account but pelvic floor exercises are particularly important to prevent possible problems such as a uterine prolapse in later life.
  • Hypermobility has a high inheritance. This does not mean the child will necessarily develop any symptoms, either in childhood or later on in life.

Musculoskeletal Issues in Pregnancy

Joint laxity increases during pregnancy; existing problems may be more of a problem and new joint pains / instability may arise. However, some individuals report feeling much better while pregnant. It is important to remain fit and active during pregnancy, with walking, swimming or exercise in water recommended.

Low back and pelvic pain is a common symptom in pregnancy. The presence of hypermobility is one of several factors associated with developing lower back pain.

Increased instability of the sacroiliac joints may be responsible for pelvic pain in pregnancy.

Pubic symphysis dysfunction is also commonly encountered in hypermobiles. This may present with pain in the midline of the groin radiating in to the lower abdomen and hips. The pelvis can feel very unstable making walking / weight-   bearing potentially very painful.

Physical rehabilitation with support from a therapist may be required early and throughout pregnancy. Low back and pelvic pain can be helped by a maternity or sacro-iliac support in conjunction with exercise and pacing of activities

Positioning during delivery should be carefully thought through to make this as comfortable and physically safe as possible. It is worth discussing this with the Midwife and trying out positioning for a normal delivery, noting what works. Try to ensure the hips/legs are supported and those with pelvic girdle pain will benefit from delivery positions that do not involve lying on their backs.

The day to day lifting and handling of an infant can lead to problems for some hypermobile individuals. However, women frequently report that any pain during pregnancy has disappeared following delivery. Nevertheless mum may find breast-feeding and care of her newborn baby more difficult if they are still troubled by pain, muscle weakness or subluxations/dislocations, particularly in the arms.  Some simple ‘tricks’ include:

- Using carrier straps that hold baby in the centre of gravity and at the front of chest.
- Cradle supports for bathing, clothing baby.
- During breast feeding resting baby on a well-supported structure such as small beanbag placed on mums lap, or lying down with baby cradled in front.
- Reducing the activities that require bending as far as possible, but when bending forwards remember to bend the hips and knees. Try to ensure surfaces for changing nappies etc., are at an appropriate height.
- Looking after a newborn baby can be very tiring. Taking care to pace activities and allowing some rest time each day can be beneficial.
- Aim to return to normal exercise to maintain fitness (from 6 weeks post delivery or 12 weeks post caesarean).

All these issues can be managed by physical therapies and practical solutions.

Pelvic floor weakness

The pelvic floor muscles may be sore and stretched after delivery. It is helpful to start exercising the pelvic floor muscles after a few days rest to help reduce the risk of weakness in this area later in life. Practise gently pulling in the muscles  (as if stopping the flow of urine) and hold for a few seconds while you breathe. Let the muscles go and relax fully. Repeat between 10-20 times a day and incorporate into everyday activities. If there are any continence issues see a physiotherapist for advice.

The Infant

Hypermobility follows a dominant pattern of inheritance there is about a 70% chance that offspring will be hypermobile. It is important to note infants and children are generally more hypermobile and may loose this to some degree as they grow. It is also important to understand that even if they remain hypermobile does not necessarily mean that they will develop symptoms. The important thing is that if they did develop any problems, their doctor appreciates that JHS / EDS-HM is present in the family and may explain their symptoms.

Dr Alan J Hakim MA FRCP
Consultant Physician and Rheumatologist

And

Rosemary Keer MSc MSCP SRP
Physiotherapist, Hospital of St John and St Elizabeth, London

Written June 2013. Reviewed by Prof H Bird. Planned Date of Review June 2016

To read more about Pregnancy and other aspects of the management of hypermobility syndrome why not take a look at the HMSA booklet “A Guide to Living with Hypermobility Syndrome” available alongside other booklets and books in the HMSA Shop

Academic References

Charvet PY, sale B, Rebaud P et al. Ehlers-Danlos syndrome and pregnancy. Apropos of a case. Journel of Gynaecology Biology and Reproduction (Paris). 1991; 20:75-78.

De Vos M, Nuytinck L, Verellen C et al. Preterm premature rupture of membranes in a patient with the hypermobility type of the Ehlers-Danlos syndrome. A case report. Fetal Diagnosis & Therapy. 1999;14(4): 244-47.

Hay-Smith J, Morkved S, Fairbrother KA. Pelvic floor muscle training for prevention and treatment of urinary and faecal incontinence in antenatal and postnatal women. Cochrane Database System Review. 2008;8(4):CD007471

Hermanns-Le T, Pierard G, Quatresooz P. Ehlers-Danlos-like dermal abnormalities in women with recurrent preterm premature rupture of fetal membranes. American Journal of Dermatopathology. 2005; 27(5): 407-10.

Keer R, Grahame R. Pregnancy and Hypermobility. In Hypermobility, Fibromyalgia, and Chronic Pain. Hakim A, Keer R, Grahame R (eds). Churchill-Livingston, London 2010.

Marnach ML, Ramin KD, Ramsey PS et al. Characterization of the relationship between joint laxity and maternal hormones in pregnancy. Obstetrics and Gynecology. 2003;101(2): 331-35.

Pepin M, Schwarze U, Superti-Furga A et al. Clinical and genetic features of Ehlers-Danlos syndrome type IV the vascular type.[erratum appears in N Engl J Med 2001 Feb 1;344(5):392] New England Journal of Medicine. 2001;342(10): 673-80.

Thornton JG, Hill J, Bird HA. Complications of pregnancy and benign familial joint hyperlaxity. Annals of Rheumatic Diseases. 1988;47(3):228-31.

van Dongen PW, de Boer M, Lemmens WA et al. Hypermobility and peripartum pelvic pain syndrome in pregnant South African women. European Journal of Obstetrics, Gynecology, and Reprodroductive Biology. 1999;84(1): 77-82.

Volkov N, Nisenblat V, Ohel G et al. Ehlers-Danlos syndrome: insights on obstetric aspects. Obstetrical & Gynecological Survey. 2007:62(1):51-7.

 


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The information provided by the HMSA should not take the place of advice and guidance from your own health-care providers. Material in this site is provided for educational and informational purposes only. Be sure to check with your doctor before making any changes in your treatment plan. Articles were last reviewed by our Medical Advisors as being correct and up to date on 5th June 2004.

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