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Title V Technical Assistance Meeting

 Real Life Story

Prior Knowledge Makes Difficult Situations Easier to Navigate

By Shawne WittrockShawne Wittrock1.jpg
Family Navigator, Child Health Specialty Clinics

My second pregnancy started out very similar to my first, which according to our doctor was a 'textbook' pregnancy. At 15 weeks my husband and I received the surprise of a lifetime, we were having twins! Two short weeks later at our first appointment with our Maternal Fetal Specialist, we were told we had monochorionic, diamniotic (one placenta, two amniotic sacs) twins. In addition, I was diagnosed with Stage II Twin to Twin Transfusion Syndrome (TTTS).

My husband and I were told we would need to schedule an appointment in Cincinnati the following week, an 11-hour drive from our home in Iowa. According to the Cincinnati Fetal Care website, "TTTS is a rare, serious condition that can occur in pregnancies when identical twins share a placenta. Abnormal blood vessel connections form in the placenta and allow blood to flow unevenly between the babies." By the time we reached Cincinnati for testing, I had progressed to Stage III TTTS. Upon medical advice we decided to proceed with a laser surgery procedure to sever the blood vessel connections. After surgery we were told that our twins had a 90/10 placental share and that it is rare for a baby with less than a 15 percent share to survive.

We had weekly ultrasounds when we returned home and at 26 weeks, the membrane separating the twins tore, making them monochorionic, monoamniotic (one placenta, one amniotic sac). I was immediately hospitalized due to concerns of cord entanglement and concerns with umbilical blood flow. Our baby girls, Sutton and Eliza, were born at 32 weeks, weighing 2 lbs. 13 oz. and 5 lbs. respectively.

During their NICU stay both girls received oxygen and treatment for jaundice. A cyst was discovered on Eliza's head ultrasound, which then led us to seek genetic testing that showed no present concerns. Eliza was discharged from the NICU after 34 days and Sutton joined us at home after 47 days; organized chaos became our new normal!

Today, our girls are 20 months old and are growing and thriving! Sutton is still small, weighing only 20 lbs., but she continues to gain weight consistently. Developmentally both girls are doing much better than expected; their gross motor skills are put to use constantly with their love of climbing everything and jumping on the trampoline. Communication is developing slowly; receptive language is strong as they understand questions and directions, but expressive language skills need improvement. Sutton will likely be getting tubes in the coming months so we are hopeful that will help with her language acquisition. Eliza passed her most recent hearing test but we will continue to monitor her as well.

It has been such a joy to raise twins, their personalities are very distinct; Sutton jumps right into most things and goes full speed ahead, whereas Eliza is much more reserved, most of the time, and thinks before she acts. And although Sutton and Eliza may butt heads, they band together if they see someone picking on the other one, usually this ends up being big sister.

Because of my previous work experience I had knowledge of our local services, and I was able to reach out to our IDEA Part C Early ACCESS program to connect with early intervention services. I often think back to our time spent in the NICU and think of other families who may be overwhelmed with the situation they have found themselves in and I am thankful for the prior knowledge I did have and that I am able to help use that knowledge to connect families with programs and resources available to them!