TTTS Success Story

Discussion in 'High Risk Pregnancy' started by kpmc, Apr 5, 2019.

  1. kpmc

    kpmc New Member

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    This is a very long post about our journey through twin pregnancy and the wild emotional ups and downs and more ups that it took us through. The hope is that someone going through a similar situation will find it, read it and take some comfort in the possibility that everything will be ok.


    The short version is we had mono-di twins, girls, there was a large nuchal fold discrepancy, which manifested in TTTS diagnosed just before 16 weeks. It was a very scary few weeks, followed by pins and needles for the rest of the pregnancy. My wife had the laser ablation surgery to fix the TTTS at 16 weeks and the babies were born happy and in overall good health at 36 weeks 2 days!


    Truly a best case outcome, but it is very possible. So please try to be as positive as you can. I know how hard that is, but it’s the only way to get through it. It looked really bad for us, there were some dark times, but we made it and so can you. Good luck!


    The long version:

    We found out my wife was pregnant in early January 2018, our first doctor appointment/ultrasound was a few weeks later and we’re told we are indeed pregnant and it’s TWINS! They were pretty sure they were identical at that point already and we were about 7 weeks along. Follow up appointment at approx. 9 weeks, everything looked good, confirmed they were identical and were Monochorionic-Diamniotic (one placenta, two amniotic sacs). We told our families the exciting news over the next few weeks. Next doctor appointment was at 11 weeks, 0 days. The ultrasound at this appointment showed a large discrepancy between the two babies’ nuchal fold thickness, one was below 2mm and the other was more than 5mm. This was the first indication that something wasn’t right with the babies. Docs ordered chromosomal testing and some blood work to see what was going on that could have been causing this. The chromosomal tests came back normal and we found out they were GIRLS!!! Our next appointment at 12 weeks, 5 days the ultrasound showed nuchal folds that were MUCH closer together and both within the “normal” range. Phew, that was weird, but it looks like things have righted themselves and we’re going to be ok. Next appointment was 15w + 5d, right away we could tell something was off in the ultrasound portion of the appointment, here we go again. We talked to the doctor and he informed us that the girls had developed Twin-to-Twin Transfusion Syndrome (TTTS) and it was looking pretty pronounced, especially for this early of a gestational age. We were referred to the prenatal specialists, who deal with high-risk pregnancies. Our appointment there the next day, confirmed they did have Stage III TTTS, and in addition to that there was also Selective Intrauterine Growth Restriction (sIUGR) present as Baby A (donor baby) was significantly smaller than Baby B (recipient) - about a full week behind. We weighed our options as far as treatment goes, doing nothing was not an option, so our two main choices were to have Fetoscopic Laser Ablation surgery to seal off the arteries connecting the two babies (typical treatment for TTTS) or to Selectively Reduce Baby A in order to give Baby B the best chance for survival. Our doctors had advised that Selective Reduction was probably our best chance to have any healthy babies, so we were extremely hesitantly and tentatively leaning in that direction. We had another appointment 2 days later to take another look at the situation and re-assess. In that appointment Baby A was showing plenty of movement, even though she had a very limited amount of fluid in her sac. The position of Baby A and the orientation of the placenta and cord inserts, in addition to the amount of “fight” Baby A was showing told us that Selectively Reducing her was not the right thing to do or even the safest option. So, we opted for the Laser Ablation operation and breathed a huge sigh of relief, they were both going to have a chance to survive! We went in for the surgery at 16w + 3d. They got my wife all prepped and into the OR, they had planned on inserting the fetoscope through a small incision in the side of her abdomen, going into the uterus, turning the scope and sealing the arteries with a laser on that scope. At the very last minute, the nurse came out and grabbed me from the waiting room, scrubbed me in and said the plan was changing. The placenta lying across the front of the uterus as it was, would make the angle difficult to get the scope in and turn it to perform the laser portion of the procedure. They thought the risk to the membranes was too great and wanted to instead perform the procedure through an incision at the belly button. This combination of circumstances hadn’t presented itself to the surgical team up to this point, so this would be the first time they’d performed it in this way. They thought it gave us the best chance to have a successful surgery and to get the pregnancy as far along as possible, given that it would be minimally disruptive to the membranes. After that slightly hectic and scary last minute change, the surgery went very well. Recovery sucked. my wife was in a fair amount of pain for about 2 weeks, most of the pain was trapped gas in her intestines, but some of it was muscle soreness in her abdomen. After those few weeks though we were just focussed on growing those babies and keeping them in there as long as possible. Goal #1 was set at 23 weeks. We started off with weekly ultrasounds after surgery, which all looked good. Eventually that got backed off to every other week. Things looked good, the TTTS was gone and the sIUGR looked like it had also stopped affecting them. Baby A was still smaller, but was not falling farther behind. As I remember, we had our first post-operation Fetal Echocardiogram at 17w + 2d, and everything looked ok. Our next Echo would have been 24w + 1d I think, and at that one the doctors noticed that the velocity of blood flow in Baby B’s pulmonary valve was a bit high. Hinted at Pulmonary Valve Stenosis, but wasn’t certain at this point. Something to watch. We had hit our first goal of 23 weeks though! The baby’s were technically viable at this point, so we were feeling upbeat and hopeful. We set our next goal at 28 weeks, as we were told that the stability of the brains and ultimate outlook vastly improved between 24 & 28 weeks. We kind of cruised through the next 4 weeks, everything looked fine in the ultrasounds we had. At 27w + 5d we had our next Growth & Echo ultrasound. We were excited for the growth, mostly to see how Baby A had been coming along, and we saw that she had gained a little bit of ground (at least from the percentile standpoint)! Very exciting. The other shoe dropped yet again however, as we found out that Pulmonary Valve Stenosis was indeed present in Baby B and would need to be addressed at some point. It was classified as Moderate to Severe (not Critical though) and there was a fairly non-invasive way to address the issue (Balloon Dialation of the valve). The outlook/prognosis for this condition was typically very positive, in most cases the initial dialation is done and nothing else needs to be done ever again. There will just have to be follow up with a cardiologist on a yearly basis. So, not the worst thing, but we were still freaking out a bit, one of our babies has a congenital heart defect. That took a while to sink in and process. Nowhere to go but forward. We hit that 28 week mark 2 days later and set our next goal at 30 weeks. More uneventful appointments followed and we cruised passed that 30 week goal. At this point we’re feeling mentally great about how far we’ve made it, but my wife is starting to get very big and very uncomfortable. Next goal was 33 weeks. We had another Growth/Echo at 32w +1d. Growth looked good, Baby A gained a few more percentage points and Baby B looked good still. The Echo showed about the same as it did last time, so we’ll wait and do an echo when they’re born and make a plan with the cardiologists at that point. Starting at the 33 week point we had weekly Biophysical Profile Ultrasounds and Non-Stress Tests, which went great, the babies were moving well and hitting all the marks pretty quickly at 33...34 & 35 weeks. We worked with the doctors and discussed between us and my wife decided to give birth to these little miracles at 36 weeks and 2 days. my wife went in for the steroid shots to help the babies lungs develop in the two days before the birth was scheduled for. We arrived at the hospital and checked in at 7:30am for the birth of our twins! It took about 2 ½ hours to get my wife prepped and get all the doctors ready for the c-section and away we went. The surgery started at approximately 10:30am and our two beautiful girls were born at 10:51 and 10:54.


    OB/GYN Ultrasounds - 5

    MPP (Prenatal Specialists) Appointments - All had Ultrasounds - 23 total


    Nights in Hospital:

    Wife - 6 total (3 for each surgery)

    Baby A - 5 in NICU

    Baby B - 4 in NICU, 1 in CVCC


    Operations:

    Fetoscopic Laser Ablation Surgery

    Cesarean Section Surgery

    Balloon Dilation of Pulmonary Valve through Catheter
     
  2. Elize

    Elize Well-Known Member

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    Wow that's amazing what all you went through- how are the girls now? Was this a recent birth? I have a good friend in the hospital now and I'm in this forum looking for things to encourage her as she's had some challenges with her pregnancy so far. Thank you for sharing your story so it can encourage those who need to hear it!
     
  3. Lollypop79

    Lollypop79 Well-Known Member

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    Thankyou for sharing such an amazing story. I’m not going through anything like this but i’m so pleased to read about your experiences and although up and down with worry a really positive outcome. Wishing you all the best of luck for the future. X
     
  4. kpmc

    kpmc New Member

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    They are 7 months old now and both doing great. All the follow up appointments have been uneventful. Hope everything works out just as well for your friend!
     
    Elize likes this.

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