A scar blankets the wound that materializes from physical trauma endured in the past. Displayed on the body like artwork on a canvas, the design tells the story of a major life event.
In the 2018 edition of Connexions magazine three women discuss their badges of honor – surgery scars from a fetal procedure to save their twins who were diagnosed with Twin-to-Twin Transfusion Syndrome (TTTS) Their narratives are unique in terms of the individual journey. Yet each heartfelt account demonstrates that the scars derived from surgery serve as reminders of gratitude, strength, and perseverance.
TTTS affects monochorionic (shared placenta) multiples when blood passes disproportionately from one baby to the other through connecting blood vessels within their shared placenta. Considered rare in occurrence, the condition is categorized as high risk and comes with numerous, often life-threatening, complications.
Receiving news of the scary diagnosis is unsettling and many women experience grief and depression as they consider the implications to their pregnancy and how it will impact their family. Surgery is often scheduled within days of the diagnosis, giving parents little time to search for answers and support to cope with fear of the unknown.
If you are dealing with the uncertainty of a TTTS diagnosis, please consider four things:
1. There’s nothing you did that caused the disease to occur. The condition, according to medical professionals, occurs at random in monochorionic pregnancies. It is very important to understand that it’s nothing you ate, your fitness routine, or lifestyle choices that caused the prognosis. There is no reason to flood your mind with thoughts of guilt about anything you may have done that resulted in your current circumstance.
2. Continue to make room for hope. It can be difficult to remain optimistic after hearing that your pregnancy won’t be textbook in nature. However, medical advances in the diagnosis and treatment of TTTS have created options for positive outcomes. Facing the possibility of a complex surgery can be tough, so it’s important to manage stress and care for your mental health. Rely on family and friends for support and lean on them as often as you need to when your mind drifts to dark places.
3. Be cautious when researching information online. It’s important to educate yourself about what to expect, but please do so with caution. Also keep in mind that individual experiences may vary. Rely on credible sources when doing your research so that you don’t overwhelm yourself with inaccurate information. The Fetal Health Foundation is a well-respected nonprofit organization that was formed by the parents of TTTS survivors. Its medical board of directors is comprised of 15+ medical experts from maternal fetal centers across the country. Turn to organizations such as this to ensure that you receive the most up-to-date information about your condition and crucial connections to specialist medical teams.
4. Know you are not alone. Many families experience fetal syndromes and find it cathartic to tell their story. We connect through the power of shared experience. And there is great comfort in knowing that the path ahead has been traveled by someone else. It’s inspiring to hear others stories of resilience, and reassuring to know that we are not alone on the receiving end of life’s wicked curveball. If you are in search of support, please visit the Fetal Health Foundation – we’re here for you.
For those who have undergone surgery due to a fetal syndrome, their scars are a constant reminder of what their family went through to try and have their dreams realized and how hard they fought to bring life into the world. To read the stories of three mothers who celebrate their TTTS scars, check out the article on pg. 6 of Connexions magazine.