Table 2 Strategies pertinent to EDS management during lactation
From: Considerations for lactation with Ehlers-Danlos syndrome: a narrative review
EDS Subtype | Sign-symptoms | Suggestions for breastfeeding support | ||
|---|---|---|---|---|
During pregnancy | Initiating breastfeeding | Throughout lactation | ||
Classical | *Skin can be easily torn and will not repair itself well or quickly *Joint hypermobility *Atrophic scarring, poor healing *Skin hyper-extensibility | Providing breastfeeding education early in the third trimester can be helpful as preterm labor can occur | Prevent nipple trauma through early evaluation of latch | Prevent scarring and manage wounds with on-going feeding assessment |
Splinting the pelvis, ligaments, and joints can help with pelvic pain | Assess positioning during breastfeeding to prevent injury | Frequent feedings and slow weaning minimize engorgement | ||
Classical-like | *Soft-velvety skin (without the typical atrophic scarring seen in classical EDS) leads to easy irritation. | Be conscious of rough fabrics and materials including silicone which can stick to the skin and must be removed gently to avoid tearing of the skin | Ensure optimized latch. Gentle breast massage may be useful for alleviating discomfort of secretory activation | Avoid positions and equipment that shear or create torsion of the tissue |
Cardiac-valvular | Progressive cardiac and valve problems Dizziness and fainting can occur | Will likely require regular follow-up with Cardiology Practice slow standing | Will likely require follow-up with Cardiology Report palpitations and new symptoms | Reminders to pick the infant up after standing can help prevent falls |
Vascular | Unusual bruising for no apparent cause Postpartum hemorrhage can occur | Monitor for orthostatic difficulties, and practice safe habits when first standing; avoid rushed movements | Placing the infant skin-to-skin within the first hour of life is crucial | Reminders to pick the infant up after standing can help prevent falls |
Hypermobile | Severe generalized joint hypermobility. Separation of the pubic symphysis and coccyx dislocation have been reported | Prevent injuries using focused and slow movements | Physical support and positioning modifications may be needed for basic infant care | Monitor for increasing pain difficulties, check safety of medication regimen for breastfeeding |
Arthrochalasia | Multiple dislocations and / or subluxations | Prepare to practice aggressive, daily splinting measures to support joints | Exercise caution with movements and monitor for tissue trauma | Can complicate use of a breast pump |
Dermatosparaxis | Extreme skin fragility and severe susceptibility of bruising | Requires a specific focus on skin care and precautions | Consider use of skin barrier protectant if using a pump | Monitor for chronic wound development |
Kyphoscoliotic | Dislocations and / or subluxations of the shoulders, hips and knees | Abdominal bracing may be beneficial during the third trimester | For hearing loss may need visual alerts to signal infant needs | Special considerations should be given to ergonomics when seated |
Brittle cornea syndrome | Practice classic considerations | For new symptoms, seek medical eye care | Use touch to increase awareness of baby’s positioning if difficulty seeing | Identify strategies to assist in infant care that are touch or sound focused |
Spondylodysplastic | Reduced muscle tone and rigidity can occur | Refer to physical therapist; stretching needs to be carefully balanced with strengthening | Match comfort with good ergonomic positioning to prevent injuries | Watch for good ergonomic positioning to improve long term outcomes |
Musculocontractural | Risk for hematomas | Practice skin and tissue considerations An exercise ball may be helpful | Use support devices to use burden on musculature | Rehabilitative tape may be useful to stabilize ligaments during breastfeeding sessions |
Myopathic | Muscle weakness | Use of a pelvic belt may be useful | Mother may need additional structural and positioning support during lactation | Monitor for chronic symptom development or worsening |
Periodontal | Inflammation of the tissue around teeth | Can lead to food avoidance. Refer to a dietitian / nutritionist to ensure adequate food intake | Follow-up with a dietitian / nutritionist to reassess nutritional needs during lactation | Continued follow-up with a dietitian / nutritionist to protect milk production |