Emma Bliss learned of her X-Linked Myotubular Myopathy carrier status the way many x-linked carriers do - by giving birth to a child with the condition after a healthy pregnancy and no family history. Caleb, Emma's second child, lived for 5 months in the NICU and was held and loved by his family the entire time. Emma is a mother of three and resides in New Hampshire with her husband, two kids and dog. After Caleb passed, knowing they wanted to grow their family, they sought the guidance of a genetic counselor. Laying all the odds and information on the table, they decided to try naturally and found out at 11 weeks, that they were carrying another baby boy affected with XLMTM. After a painful decision to terminate at 13 weeks, knowing they would never put another baby through what Caleb had been through, they decided that IVF and embryo testing might be the next course of action. While building a probe with a lab and completing all the costly preliminary IVF tasks, they found out that they were pregnant again with a baby girl naturally. Through the entire experience, Emma has learned that what might be the right path for one family, might be the wrong for another and that every single decision is personal. She shares that knowing all your options, even when faced with difficult and gut-wrenching decisions, is the first and largest step. This is her story.
As a disclaimer, this podcast series features sensitive topics. Understand that the opinions and topics do not express or represent the organizations personal feelings on any matter but are here to solely share the guest speaker's journey and life's experiences. These opinions and stories are theirs and theirs alone.
