By Kallyn L.

Editor’s note: Recently, New Beginnings had a request from a reader for stories about nursing a child with a disability. We received the following short story in response to that request. Thank you for sharing your story, Kallyn.

Almost ten months into our nursing journey, my son, Liam, was diagnosed with 22q Deletion Syndrome. 22q Deletion Syndrome, also known as DiGeorge syndrome, is a genetic disorder caused by the deletion of a small piece of chromosome 22. Symptoms can vary but may include congenital heart defects, cleft palate, facial differences, feeding difficulties, speech and language delays, immune system difficulties, learning difficulties, low calcium (hypocalcemia), thyroid disorders, and more.

Instead of being a shock, the diagnosis brought a sense of relief to my family. For months, we had been wondering why he struggled with reflux, why he wasn’t meeting milestones, and how he became critically ill from common illnesses.

Unlike most infants with 22q Deletion Syndrome, Liam didn’t have significant feeding challenges. Nursing became his primary source of comfort and security, and it was instrumental in keeping him as healthy as he was. Our nursing journey came to an end when Liam was just shy of three years old. The following year in preschool brought its own share of illnesses but also served as a powerful reminder of the incredible benefits of human milk that had supported us in the years before.

You can learn more about 22q Deletion Syndrome here.

Resources and inspiring stories about nursing a child with a disability or special needs (not specific to 22q Deletion Syndrome):

• Breastfeeding Under Special Circumstances
• Breastfeeding Through Clubfoot Treatment
• Born Unable To Swallow: My Journey To Breastfeeding My Son
• Nursing a Baby with a Colostomy
• Special Needs
• Breastfeeding Your Baby with Down Syndrome
• Resiliency Comes in All Sizes: Breastfeeding a Baby with Down Syndrome (Part 1 of 2)

Please consider sharing your stories about feeding human milk to a child with a disability or anything related to nursing and breastfeeding. Send blog submissions to Kylie at [email protected].

Supporting Breastfeeding Families–Today, Tomorrow, Always

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