I am writing to share my experience as a patient with diagnosed Hypermobility Spectrum Disorder (HSD) in the hope that it may contribute to education, awareness, and future improvements in obstetric care for individuals with connective tissue disorders.
In January 2025, I experienced a stillbirth at 35 weeks gestation the loss of my baby girl Marcheline.
My pregnancy had been followed as low risk. I disclosed my Hypermobility syndrome, chronic fatigue during pregnancy and experienced significant connective tissue strain, pelvic girdle pain, swelling, and prolonged cough. Fetal movement was strong and reassuring throughout the pregnancy until the final week, when I presented multiple times to hospital with concerns regarding decreased fetal movement.
Despite repeat presentations, antenatal assessment did not escalate beyond non-stress testing and a regular ultrasound. One test required several hours to meet minimal criteria. No biophysical profile was performed prior to discharge. The following day, absent fetal movement was noted, and intrauterine fetal demise was confirmed.
Following delivery, the placenta was lost due to a hospital miscommunication, preventing placental pathology and definitive determination of cause. Fetal autopsy and maternal testing were otherwise unremarkable, leaving placental or umbilical cord pathology — areas increasingly discussed in relation to connective tissue disorders — unexamined.
I have since learned that HSD and related connective tissue conditions may be associated with placental dysfunction, abnormal implantation, and increased obstetric risk, yet this was not meaningfully addressed in my care.
I am now pregnant again and advocating for proactive monitoring and recognition of HSD as a relevant condition in pregnancy.
I am sharing my experience in the hope that it may contribute to improved clinician education, research attention, and clearer guidance for the management of pregnancy in individuals with HSD.
My goal is to help prevent similar outcomes for other families.
Thank you for the work you do and for taking the time to consider patient experiences such as mine.
Sincerely,
Brianne Green