MY JOURNEY WITH TTTS

By: kybelle616, on February 22, 2017

So this is a different kind of blog than I would normally write. But since the girls just turned 4 this past weekend, I wanted to share my story of my TTTS JOURNEY I went through with them! My husband and I try to spread awareness whenever we can to other families going through an identical twin pregnancy.

I found out I was pregnant with Identical twins at just 6 weeks pregnant. I went in for an early ultrasound because I was experiencing some bleeding, and after having an early miscarriage before my son, I was sent into a panic. When the doctors at my regular obgyn office determined there was only one placenta for both babies to share, I was sent to a MFM doctor, basically a doctor who specializes in high risk pregnancies. I was seen biweekly up until my anatomy scan ultrasound at 20 weeks. Up until that point, the girls sizes, fluid levels, and blood flows always looked good. At my 20 week scan, I knew something wasn’t right, when we were in there for over an hour with the ultrasound tech, and she then had to call the doctor in. They were both unable to find Hannah’s bladder on the scan, and the babies amniotic fluid levels were way off. Normal fluid levels range between 2-8cm per sac. Hailey was at about 11cm, Hannah was less then 1cm. It was like she was wrapped in shrink wrap. That alone would alert the doctor of Stage 1 TTTS, Twin to twin Transfusion syndrome. Not being able to see Hannah’s bladder , alerted them this could be Stage 2.

TTTS was something I had heard about briefly, and had read up on, and was always worried about in the back of my mind. It occurs in about 10-15% of Mono-di ( Identical twin) pregnancies. The week leading up to my appointment, I kept worrying about it, as I had some symptoms. My stomach size had grown rapidly, and I was more then the typical “ uncomfortable” . I was in pain sitting, standing, laying, everything hurt. At that time, I didn’t know this was abnormal, since this whole “ twin pregnancy thing” was all new to me.

When I heard the doctor say “ twin to twin transfusion syndrome, and laser surgery, NYC consultation, my heart sank. The fear and dread I felt in that moment was indescribable. We were sent home with a call in to the head doctors at NY Presbyterian hospital in NYC for a consultation for a clarification on the diagnoses, and for treatment. The only two doctors in New York state that can treat TTTS with Laser ablation surgery, is in NYC. So we left the appointment , hoping and praying we could get in and be seen as soon as possible. We knew we didn’t have a lot of time, as TTTS can progress very quickly.

We got in to be seen two days later, and the diagnosis of Stage 3 TTTS was confirmed. We had already progressed from stage 2 to stage 3 in 2 days. Emergency Laser ablation surgery was scheduled for the following morning.
As we sat in the office with the head high risk doctor discussing the surgery, we were told our stats. Doing the surgery would give us a 50% chance that both babies would survive after, 80-90% chance one baby would survive. The risk of not doing the surgery, 90% mortality rate. So we were all in. I don’t think I have ever prayed as much as I did that night. I don’t think I had ever felt so helpless or so scared in my entire life.

The next morning, as I was wheeled into the OR, after I had had another ultrasound, the doctor told us they were not very optimistic that Hannah would survive the surgery. I had a very hard time during the surgery. I was given a spinal, but also had to have sedatives administered throughout the procedure to keep me calm. I was crying and shaking uncontrollably the entire time. Dave was able to be in there by my side, which was comforting. After the doctors performed the surgery, they also then drained about 2 liters of fluid out of the sac that Hailey was in, in hopes to help both babies fluid levels to even out. I stayed overnight for monitoring, and had an ultrasound the next morning to see where we were at. Thank god, our scan showed the procedure was successful, so far. Both girls were doing OK, and finally we were able to see a bladder for Hannah. Her fluid level was even increasing from the below 1cm that she had the day prior. I was sent home later that day on modified bed rest, and was to come back in the following week to be seen again and monitored. .For a few weeks, we would go back three times a week to NYC hospital, monitored, and things continued to look good and remain stable. I had an echocardiogram to check the babies’ hearts, and they looked good, which was a relief. I had an MRI to check the girls brains, and those looked good as well!

Then on Thanksgiving morning, I was woken up with severe itching. After being seen at my regular local obgyn, I was again sent back down to NYC, since I was already high risk. I was then diagnosed with cholestasis. A rare liver condition that can occur during pregnancy. I was kept in the hospital for monitoring for a few days, was put on a medication regimen, and then discharged. I was continued to be seen 3 times a week. It was the beginning to mid December, during a routine check up in NYC, that I knew things weren’t good again. I think at this point Dave and I had become experts at reading the ultrasound machine and all the levels they would check . The girls blood flow again, was uneven. They called the doctors back in. They were perplexed, as every other level looked good. They were now concerned that Hailey wasn’t receiving enough blood and was becoming very anemic.We discussed doing a possible blood transfusion via the girls umbilical cords, even discussed doing a second laser surgery. All of which, were obviously risky to do. We were at about 24/25 weeks at that point. .They decided to continue to monitor me three times a week, and go from there. Each time we went, things remained abnormal, but stable. So we kept trekking on, hoping and praying for the best. Appointments were always so nerve wracking, I would have a packed bag each appointment in case they decided to admit me for inpatient monitoring. Which was my worse fear, as I didn’t want to leave my little Hayden, who was only three at the time. At the 30 week mark, January 30^th, I was in for a routine appointment, and doing a stress test, the babies heart rates had some decels. I was immediately admitted for inpatient monitoring, and put on the high risk delivery floor, as they feared they may need to do my csection that evening. I was given a second round of steriod shots to help the girls lungs develop, and was put on an IV of magnesium to help try to stop early delivery and to protect the girls brains. After 12 hours of being on magnesium, which was HELL, my stress tests were back to normal, and I was moved up to the long term maternity unit to continue in patient monitoring. The goal was to keep the babies inside my belly until 32/34 weeks. It was a MIRACLE and grace by God, that we made it to 34 weeks. In my heart and back of my mind, I honestly never thought I would leave that hospital, with two babies in my arms. Even as I was wheeled into the OR the morning February 19, I was still not confident, I didn’t want to get my hopes up. Everyone was so unsure how the girls would be at birth , after having such unpredictable scans after the surgery. They were born at 34 weeks and 2 days, and were perfect. Hannah was 4 lbs 10 oz, Hailey was 4 lbs 8 oz. Hailey needed some assistance with breathing when she was delivered, but by the time I was wheeled into recovery, they were both breathing room air, and drinking from a bottle! Hailey needed a feeding tube for about 24 hours because she was too sleepy to take a full feeding from bottle, but aside from that, they were kept in the NICU just six days, for monitoring to be sure they were eating and growing ok. Six days later, we were all sent home, together, as family. I BAWLED as I was wheeled out to the parking area with both babies with me. I never in my heart, this would have a happy ending. These girls, are my miracles. They are here because of the amazing doctors Dr. Miller, and Dr. Simpson at NY Presbyterian hospital, and of all the prayers my friends and family sent.

I don’t share my story nearly enough, but hoping this BLOG will help spread awareness and educate people about this syndrome. Too many obgyns don’t monitor for this as closely as they should. Every women pregnant with ID twins, should be aware of this, and know the signs and symptoms.

I would be happy to talk to anyone going through this , or at risk .

~Kylie