Surviving and Thriving With TTTS

Navigating Twin to Twin Transfusion Syndrome

Hello my name is KJ and I fell pregnant with MO/DI twins in December 2023.

Tiny but mighty: Sadie and Willow at 9 months old

Everything was a normal twin pregnancy until I was 16 weeks pregnant. It was a Thursday when I went in for a routine ultrasound at Lower Hutt hospital, and the sonographer said twin A was smaller than what they should be compared to twin B. I was referred to the specialist at Wellington Hospital for potential twin to twin transfusion syndrome (TTTS), and was seen the following day. After another ultrasound they had a lot of concern, but were unable to determine how bad the TTTS was, so called Auckland Hospital to figure out what the next steps should be.

Within 16 hours I was flown up to Auckland Hospital for another ultrasound. I was told I had Stage 3 TTTS and Type II Selective Fetal Growth Restriction (sFGR). The next day I had fetoscopic laser surgery, and it was touch and go if both babies would make it the following 24 hours. I was told that the surgery wouldn’t fix the problem, but it will hopefully prolong labour.

Fast forward to 24 weeks gestation and everything had been going fine up to this point; the only complications I had from the surgery was my membranes had come away from my uterine wall, but no biggy.

By this point (24 weeks), baby A stopped growing again and I was required to be admitted into Wellington Hospital with daily ultrasounds and CTGs, and Selective Fetal Growth Restriction was now at Type III.

At 30 weeks baby A just could not hang in any longer and I had a C-section on 10th July 2024 to two beautiful girls weighing 930 grams and 1560 grams. I named baby A Sadie and baby B is named Willow.

My girls were not out of the woods just yet and we went through multiple blood transfusions, hernia repairs, finger surgery (from my membranes being wrapped around Willow's fingers almost amputating two fingers) and meningitis while in NICU. I finally got to take my girls home three months later on feeding tubes.

Today my girls are 9 months old and thriving. They have oral aversions from tubes being placed down the throat since birth, and are due for surgery to have MIC-KEY pegs put in to hopefully help them eat and drink.

I wouldn’t be here without the support of my husband Jarred, Lynette, Jaimie and also the meal trains from the Multiples Hutt Valley. Thank you for reading my story 🙂