March 17 will always hold a special place in our heart as today marks the 4th year anniversary of our laser ablation surgery performed by Dr. Greg Ryan and his team done in order to save our little girls from TTTS. Here is our story…
We were quite surprised to find out that we were expecting identical twins at our first ultrasound at 12 weeks. At the time, Twin to Twin Transfusion Syndrome (TTTS) was mentioned to us only because our girls looked to be sharing a placenta - it affects 10-15% of identical twin pregnancies and we would be closely monitored because of this. At 16 weeks, another routine ultrasound was done to check in on the babies - all normal. At 18 weeks, we went in hoping to find out the gender, not that we had developed a case of TTTS. Before we knew it we were on a plane that night to Toronto and spent the following day in consultation with Dr. Greg Ryan and his team determining what stage of TTTS were we at and what the next step would be. We went ahead with surgery the next morning - I was awake for the whole thing and got to see my 2 babies (in-utero) on a small TV screen.
I was discharged from the hospital the next day and back home to Calgary within 5 days of the diagnosis. I took one week off of work and then had the following week off for spring break (I'm a kindergarten teacher) and then decided to proceed with life as "normal" and returned back to work until I hit the end of May (about 29-30 weeks). We had weekly ultrasounds, then every other week (good news), then back to weekly ultrasounds. It was always a deep breath before that wand hit my belly, hoping that my donor twin was getting bigger and that fluid levels were normal so my recipient twin wasn't in stress. I'm happy to report that we made it to 34 + 4 weeks and had a 3 week "un-eventful" stay in the NICU. My girls are 3 1/2 now - Katie (recipient twin) is and has always been 1.5lbs bigger than Emily (donor twin). We have 2 happy, healthy, drive me crazy sometimes, stubborn, sweet, beautiful girls with no indicatives that they ever went through this. Amazing!!!
My hope is to assist moms to be and families by answering any questions/concerns that they might have and share my experience with them. I'm not a doctor or a fortune teller, but "we" are a survivor of TTTS and I can only offer my support and personal experience to anyone who goes through this…
Lots of love,
Natalie, Sam, Emily & Katie
Read more about TTTS with MBC's Fact Sheet on Monochorionic Multiple Pregnancy and Twin to Twin Transfusion Syndrome here.
If you are currently pregnant with multiples and concerned about the risk of TTTS, you can contact firstname.lastname@example.org so that MBC can help you connect with other multiple-birth families in your area. Find a Chapter near you.
MBC's Support Networks can also connect you with other families who have experienced a similar pregnancy and parenting journey. Join our national support networks for preterm birth, breastfeeding, higher order multiples, special needs, loss, lone parents and more.
MBC celebrates National Multiple Births Awareness Day (NMBAD) on May 28th. This year's theme is: "Twin to Twin Transfusion Syndrome (TTTS) - Early diagnosis can save lives." We will be raising awareness and fundraising to bring information about multiple births to hospital NICUs. Read more here.
Posted by Lori Oldfield on March 26, 2015