Congratulations! Your baby girl has arrived and she has Turner Syndrome. Whether you had a preterm diagnosis or perhaps a diagnosis at birth, no matter if she is a full-term or premature baby, healthy or in distress, you should find reason to celebrate even for a moment, because she made it to birth! We know that overall most babies who survive birth do fairly well in life. Now you can take a deep breath and enjoy this precious moment of bringing her into this world.
If she had a preterm diagnosis, by now you should have your medical team by your side to surveil if there are any emergent health issues.
If she were diagnosed at birth, the labor and delivery staff will assemble specialists to answer all of your questions. They will confirm the diagnosis with a karyotype blood test, scan her vital organs, and potentially provide NICU support as needed.
But, not every baby with Turner Syndrome is born in distress. Many babies are not diagnosed until much later in life, because they did not receive a preterm diagnosis nor had they shown obvious indications at birth. These babies, not identified until later in life, essentially live at risk without a diagnosis, evaluations, and early interventions. Your daughter, having the diagnosis at birth, will receive appropriate evaluations, interventions, and treatments as necessary. While this may be an overwhelming moment, you now have a diagnosis and should feel confident that you will establish a care plan for your daughter.
- Establish the medical team.
- Take good care of yourself and your family unit.
- Enjoy motherhood. Take time to bond and enjoy your precious child.
Join the patient registry
Perhaps you registered while you were carrying your daughter. She made it and we want to celebrate with you! By taking a moment to join the patient registry, we will record a positive pregnancy outcome as well as provide you with a welcome packet and birth card.
Join the TSF Patient and Caregiver Contact Registry to receive a welcome packet, share your concerns, and opt-in to receive information and news.