My hEDS birth plan

As part of my “hEDS x pregnancy” series of blog posts, I thought it might be helpful to share my birth plan or birth preferences. Lots of people warned us that nobody would even glance at it, but our experience was so very different. As I laboured through three different shifts, every single midwife and consultant not only glanced at it, they studied it and sought us out for clarification and – when at one point there was a concern about Baby Lemons’ well-being – discussed aspects of it with us, e.g. the use of forceps that we wanted to be avoided.

There’s no telling ahead of time what your delivery team will do, but I chose to do what the scouts do: be prepared. Writing a birth plan was a grounding experience for me and helped keep my anxiety at bay. By writing it down, I thought about every single aspect of the delivery, weighed up my options and discussed them with the Northerner. The plan also helped him to advocate for us while I was in a pain-induced delirium.

Are you going to have/did you have a birth plan? What would you include?


Birth plan for: Your name

Spouse: Name and contact details

Obstetrician: Name

Patient History:

I am a 31 year-old woman with Ehlers-Danlos-Syndrome Type III Hypermobility, PCOS and gastrointestinal issues. This is my first pregnancy. I am otherwise healthy and have no history of STDs or blood born diseases. I have had a healthy pregnancy without gestational diabetes, hypertension or other complications, but mild-medium SPD. Prenatal testing was all normal.

Previous surgeries healed well.

EDS-associated risks: • Preterm labor • Postpartum haemorrhage • precipitous delivery (<4 hours) • rupture of membrane • tearing of perineal skin • hematomas • prolapse of bladder and uterus • dislocations • pelvic instability

I have dietary requirements: no gluten, no lactose, no soya, no onions, no garlic, low sorbitol and fructose (cf. Low FODMAP)

Medications: None

Allergies: Penicillin

Requests for this labor and delivery:

  • I don’t mind if the consultant and delivery team is male or female.
  • I don’t mind if student midwives or medical students are present, especially if they learn about pregnancy, labour and delivery by a patient with EDS.
  • I would like my spouse and birthing partner to be with me at all times.

Pain relief

  • As advised by the Anaesthetics (yellow notes)

Delivery

Due to the risks and complications associated with EDS Type III hypermobility and childbirth, we need to be closely monitored to avoid any trauma to me or the baby.

  • Water birth
  • Gas and air. Please no drugs that alter my level of consciousness unless I need general anaesthesia for a medical emergency.
  • Please do not strip or artificially rupture membranes.
  • Avoid episiotomy
  • Avoid forceps, ventouse and other interventions to avoid injuries to baby (in case of EDS)
  • Baby put straight onto my tummy before anything else. I’d like to do skin-to-skin with my newborn immediately after delivery and any necessary resuscitation
  • I’m planning to breastfeed my baby (with help if needed)
  • Deliver the placenta naturally without drugs.
  • I am requesting delayed cord clamping for about 10 minutes after delivery until cord has stopped pulsating, as long as I am not haemorrhaging.

Requests for newborn care:

  • After any necessary resuscitation, please delay routine care until after infant is breastfed, my spouse has held the baby, and I am ready to rest.  
  • Please do his assessment in our room and check for potential EDS related injuries
  • Pacifiers are fine unless baby is having trouble with latch, in which case I will request no pacifier.

Please give me a copy of results of baby’s hearing screen, blood work, and any other tests/studies.

Requests for my postpartum care:

Careful positioning and mobilisation to reduce the risk of joint luxations as well as reduction of shear forces with regard to the skin fragility. Avoid lithotomy position due to risk of subluxations or dislocations. Early mobilisation is essential to prevent loss of strength in the musculoskeletal and cardiovascular systems. We should be checked thoroughly for development of bleeding and hematomas.

Sutures: The EDS skin can take longer to heal, sp silk sutures should be used for perineal repair.

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