In this episode, Joanna shares her journey of discovering her daughter's craniosynostosis diagnosis and managing the accompanying emotions, emphasizing the importance of seeking medical attention and early intervention services, advocating for your child, and finding support through groups and loved ones.
In this emotionally moving episode, I had the opportunity to discuss with Joanna and her daughter Astrid's diagnosis of craniosynostosis, a condition that affects 1 in 2200 births. In this episode Joanna opened up to me about:
▶︎ How Joanna's difficulty with breastfeeding her daughter and the observation of her head shape by the medical team led to Astrid's diagnosis of cranial synostosis.
▶︎ How Joanna managed the emotional journey of dealing with her daughter's diagnosis, and the immense support she received from her husband, family, and friends.
▶︎ The importance of trusting parental instincts and seeking medical attention if anything unusual is noticed in a child's development.
▶︎ How Joanna felt supported by the pediatrician who provided referrals for specialists.
▶︎ How Joanna's background as a social worker helped her advocate for her daughter and obtain the necessary care.
▶︎ How Joanna experienced postpartum depression due to her expectations of the postpartum experience and emotional shutdown due to her daughter's birth defect and how she found support from the Santa Rosa Mothers Club.
▶︎ The significance of letting go of perfectionism and control and supporting your child through whatever ups and downs.
▶︎ How joining support groups such as Cranial Kids Cranial Support on Facebook can provide advice and connect you with others going through similar experiences.
▶︎ How parents are encouraged to take advantage of early intervention services if their child is not meeting certain milestones. (In California, these services are free for children under three years old and can include speech and physical therapy.)
Cranio Kids- Craniosynostosis Support Group
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