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They Are a Force to be Reckoned With: Our Story of TTTS

Updated: Apr 28, 2020

We were very fortunate to find out during our first trimester it was identical twins, so we learned about the possibility of TTTS developing and were monitored by it closely at the Fetal Assessment and Treatment Centre (FATC) at the IWK Hospital in Halifax.

We had biweekly ultrasounds beginning at around 14 weeks. At our 20-week anatomy scan we learned that they were showing signs of being in the first stage of Twin to Twin Transfusion Syndrome. Dr. Jill Coolen and our Nurse Sheila were amazing and supportive. They explained that our baby B was the donor baby and baby A was the recipient (or Pete and RePete as we called them then).

Unfortunately the recommended laser ablation treatment wasn’t available in Halifax; however, they had a relationship with Mount Sinai Hospital in Toronto. Phone calls were made their doctors and our information was sent along, and it was decided we needed to go that day. They helped us figure out accommodations and held my hand while I cried, both terrified and hopeful. My scan was at noon that day and by 6 pm I was on my flight to Toronto with my husband and had an 8 am appointment with Dr. Ryan at Mount Sinai. My time in Toronto is a blur, most of Saturday was spent waiting in hospital and getting scans done. In just 24 hours we had moved from stage 1 to 3D. The percentages of possible outcomes were terrifying. The resident we had, Dr. Lee was one of the most amazing and compassionate people I will ever meet.

It was decided the following day we would do the surgery. On Sunday, January 21st, 2018 at 1:00 pm in Toronto we had the surgery. I was so reassured and comforted by everyone there and their skill and professionalism. The surgery was successful they had closed off the pathways between my boys and I even got photos of them in utero. That night after surgery was painful and terrifying. In our ultrasound, the next day baby B had already begun to gain some fluid back and was moving around. My husband swears he saw him punch his brother as soon as he had enough room to move again. We stayed an extra day for a second ultrasound as some of the Doppler’s had not normalized and on Tuesday afternoon we had a normal scan and could return home to Halifax, which we did the next day.

My follow-ups at FATV continued weekly, and I cannot express how wonderful the staff were there in reassuring, answering questions, and helping me through such a hard time. The “danger period” for a premature water rupture for baby A was 6 weeks, at 6 weeks and 5 days baby’s water broke at 27w 4d and off to the IWK we went. We managed another 4 weeks in hospital before the twins were born on April 12, 2018 at 11:37 pm. They weighed 4lbs 6oz and 3lbs 8oz and we’re taken to the NICU right away. About two weeks after they were born their due date was adjusted and it was felt they were likely 2 weeks younger than assumed.

We spent 6 weeks in the NICU and then came back for a week after they were diagnosed with viral meningitis. Our baby B had a harder time fighting it but he never gave up. Now, they are nearly 20 months (18 months corrected) and with. Baby b is still on average 2-3 pounds smaller and about a half-inch shorter, but that is the only thing we see from the TTTS.

Shared by: Nicole Katherine

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