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  • Writer's pictureMegan Dunn

Support "Zebra" Parents During Lactation: Considerations during nursing for parents with EDS/HDS

Updated: Mar 15

There are many types of EDS and not all hypermobility is EDS. Each person is individual and below you can find some modifications you can use for your patients who display EDS/HDS symptoms (or in some cases even have a formal diagnosis!). If you are the parent, you know your body better than anyone so choose what works for you and perhaps share these ideas with your provider if they are not as familiar with your condition. The unfortunate truth, is that those of us with the "zebra" conditions must advocate for ourselves frequently.

Joints and muscles Dislocations and / or subluxations can occur with even the slightest pressure, positioning a baby at the breast or supporting a breast heavy with milk can provoke such injuries. Management:

· Using supports to hold the weight of baby and breast like a rolled towel under the breast or weight-bearing k-tape.

· Positions which carry the entire weight of baby like “Koala”, reclined, side lying, or even resting baby on a firm surface like a table the height of the parent’s chest can make feeding more comfortable.

· For pumping, using a supportive bra, wearable pump, or k-tape to attach the pump can protect the wrists and shoulders from strain.

· EDS patients will often find positions such as tucking in their knees or crossing their legs provide temporary relief for muscle fatigue. These positions do slowly stretch out ligaments and tendons due to uncontrolled hyper-flexing during this muscle relaxation and can be damaging long-term if sustained for an extended period.

Pain

Chronic pain, often from irritated joints and muscle fatigue and slow healing of injuries are common for people with hypermobility. Chronic pain can manifest with nerve pain which some people manage with frequent small movements (fidgeting). Raynaud’s syndrome is also very common in EDS. The weight of a lactating breast combined with ligament laxity can create a burning sensation deep in the breast.

Management:

· For nipple vasospasm, warm compresses and magnesium supplementation have been reported to be helpful for alleviating symptoms along with improving latch comfort and effectiveness.

· Bouncing on an exercise ball has also been reported to ease pelvic and low back discomfort postpartum

· Physiotherapy can also play a role in improving pain as well as pelvic floor recovery after delivery.

· Gentle breast massage, supportive clothing and/or devices such as braces can minimize or prevent discomfort during feeding.

Fatigue

Pain is often associated with fatigue, which can be compounded by sleep deprivation that often accompanies the arrival of a new baby.

Management:

· Support systems for household chores, errands, older child care are useful to allow the parent to focus on recovery, rest, and establishing their milk production

· Protected Sleep supports parents having uninterrupted sleep for 3-4 hours at night along with frequent day time naps to manage pain, reduce mental health risks, and support milk production.

Skin and Tissue

Skin can be fragile, tearing and bruising easily. Engorgement with hyperplastic breast tissue can be very extreme as their tissue will continue expanding with the increasing pressure if milk is not removed. Issues with slow or very strong milk ejection reflex (MER/letdown) is often present with hypermobility/EDS.

Management:

· Correct latch depth and quality immediately.

· Educate parents about nipple care management including keeping the skin clean with gentle soap, using a lubricant, and addressing any breaks in the skin using saline to rinse the nipples daily can help prevent infection. The use of hydrogel pads or medical-grade honey can aid in healing if there are breaks in the skin.

· Manage engorgement early with gentle lymphatic massage, cool packs, and the use of diuretic foods (fresh fruits and vegetables, limiting dietary salt is generally advised however, POTS is a common co-occurring condition and requires higher than average salt intake the maintain blood pressure). Ibuprofen can also be used if there is evidence of inflammation. For some parents, anti-inflammatory foods and supplements like choline or turmeric may be preferred or necessary.

· In cases of letdown difficulty, stress reduction, reassurance, and breast massage can help provide stronger visual / auditory / tactile cues to stimulate oxytocin release and myoepithelial contraction of the alveoli and milk ducts. For those with strong let-down, repositioning the infant into a sitting position can help the infant manage the high-pressure flow that results from strong letdown.

Dysautonomia

Many patients with EDS have associated diagnoses that classify as dysautonomia such as postural orthostatic tachycardia syndrome (POTS) and which may be mistaken for anxiety.

Management:

· Continue taking your medications, if prescribed. Ask your Lactation Consultant about affects on milk production and if they pass through your milk.

· Compression socks or leggings can improve symptoms

· Be aware of not standing quickly, especially while holding your baby. Before standing, place your baby in a safe location or hand baby to another adult.


References: Francis, J., Dickton, D.D. Considerations for lactation with Ehlers-Danlos syndrome: a narrative review. Int Breastfeed J 17, 4 (2022). https://doi.org/10.1186/s13006-021-00442-9





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1 Comment


Unknown member
Nov 13, 2023

Great article! Do you think if a person has circulation issues which can be part of EDS, things get more bad during breastfeeding as they lose fluids and electrolytes while breastfeeding?

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