Online support

A year ago I was still processing that we were having twins, still coming to grips that something wasn’t quite right.

I scoured the internet for information about multiples, about discordant growth, about anything relating to the little bit of information I had: mono di twins and measuring 1 week apart at 13 weeks. Most information led me to TTTS. I was just devastated based on what I was reading.

To summarize:

What is TTTS?

-Twin to Twin Transfusion Syndrome (TTTS) is a disease of the placenta (or afterbirth) that affects identical twin pregnancies.

-TTTS affects identical twins (or higher multiple gestations) who share a common monochorionic placenta.

-The shared placenta contains abnormal blood vessels which connect the umbilical cord and circulations of the twins.

-The common placenta may also be shared unequally by the twins

-The events in pregnancy that lead to TTTS are all random.

-TTTS is not hereditary or genetic, nor caused by anything the parents did or did not do.

-TTTS can happen to anyone.

Through various forums online, I found the TTTS Foundation and was able to speak to Mary Slaman-Forsythe, the foundation’s director. She gave me such valuable information. She encouraged me to gather as much information as I could, to be proactive about my care.

The many women I connected with online also encouraged me to be proactive, to find out what was going on. My ob’s standard was to not have an ultrasound until week 20, but everyone told me that was too late. When I called my ob to ask about further monitoring, about having another ultrasound, she told me that I needed to relax, that worrying and stressing would do no good, especially this early in the pregnancy. But I’ve always listened to those nagging feelings. And the information I discovered online was frightening; I needed to know more so that I would better understand what we were facing. Just based on that ‘unusual’ 13 week scan, I couldn’t relax, I needed to know.

I learned about perinatal doctors, specialists for high risk pregnancies, and realized I needed to be seen by one. Based on my prior conversation with the ob, I knew she’d brush off my concerns again. So I started making phone calls and got shot down by every office. Turns out they only took referrals. But I wouldn’t give up; I finally found a doctor who would take me as a self-referral.

If it hadn’t been for the support I found online, I’m not sure I would have ever been as proactive as I was throughout the pregnancy and after. These women encouraged and supported me. Many of my online friends I still consider friends. Some are even my real life friends now. They helped me throughout my experience, and I hope that I can do the same for other women who find themselves in a similar situation. It’s so isolating, so scary, it’s important to realize that there are people out there who understand. Thank you to all my online friends for your support this last year.


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