Twin to Twin Transfusion Syndrome (TTTS) – The Lowe family’s story

18-days

We are Analia, Chris, Lucas and Sebastian Lowe, living in Halifax, Nova Scotia. On March 18, 2011 our twin boys, Sebastian and Lucas, were born at 28 weeks due to TTTS. The unexpected start to this journey is best summarized by this blog post written by Chris to friends and family as things were unfolding.

 
March 17, 2011
 
Hello loved ones. I believe you all know somewhat about the situation Analia, the boys and I are in, but I wanted to send along this message which explains our first 24 hrs in the IWK hospital and offer some clarity. I will be following up this email to cover today, as things have changed. It’s safe to say we weren’t expecting anything like this, but we have you all in our hearts and we appreciate the support from away.
 
The twin to twin transfusion syndrome (TTTS) was at a point that had the doctors very concerned. When I got here I was caught up on the developments. Baby B has been donating to Baby A since the last ultrasound 1.5 weeks ago. This all developed rather quickly, and in reviewing the last ultrasound pictures we were reassured that everything was normal then. Baby A has an excess of amniotic fluid while Baby B has substantially less than he should. As a result A is about 2.6 lbs and B is 1.7 lbs.
 
In typical fashion we were explained what they intended to do, the risks associated with that and the worst case scenarios. Fairly quickly they had Analia back in the fetal assessment area on the 7th floor to perform an amniocentesis. This was remarkable, they extracted 2,300 ml of fluid from around Baby A with the hopes that opening up some space in the uterus Baby B can get more amniotic fluid and start developing again.
 
Since B has been restricted in fluid, he has not been swallowing fluid like normal and his bladder couldn’t be found during ultrasound. That is a red flag which escalated Analia’s status to Stage 2 TTTS. Nothing is certain right now so they are simply monitoring Analia very closely. When they removed the monitor for the night, the nurse is pleased with the results in terms of fetal heart rate and contractions/tightening of uterus. They really won’t say how long Analia will need to be here, and obviously they will err on the side of caution, but we suspect 48 hrs for now, but it’s a monitor and adjust scenario.
 
We both feel calm and confident that my three loved ones are getting the best care possible. Basically it’s up to the wonderful staff at this hospital to do what they can and see how Analia’s body and the little rascals will respond.
 
I want to say also that Analia has been a rock throughout this whole ordeal. She is the strongest woman I know and she has been the one to help keep me calm and grounded. Since I have no control over this situation and really can’t impact it in any way, the most I can do is to be by her side and offer support. Yet again, Analia has risen to a challenge that life has thrown at us, and I get my strength from her.

-    Chris
 

The boys were born on the next day, at 28 weeks gestation, because of the TTTS.

 

 

   

 

 

 

 


Update: February 18, 2015
 
In total we spent 11 weeks in the NICU and we went through it all—blood transfusions, CPAPs, progress & regression, breastfeeding support, etc. One boy had Retinopathy of Prematurity (ROP) which was followed for a year after we left the NICU. We've seen gastroenterologists, allergy/asthma clinical immunologists, speech pathologists and more. They graduated from the Perinatal Follow-up Program a year ago, and the educational specialists were absolutely floored at the level of concentration and love of learning they were demonstrating. The boys no longer need their age corrected! They attend a Montessori school and their teacher tells me they have amazing visual-spatial skills and how well their gross motor skills are coming along. 
 
The boys are a month away from turning 4. Wow, time flies! They are developing into little boys. Typical little boys. You know, the kind that know every dinosaur name, still wet their pants, demand they eat cereal for every meal, hum and sing for the better half of their day, and argue when it’s time for bed. They are each other’s best friend and worst enemy, and we get to watch one of the most special relationships in this world flourish for years to come.
 We are thankful every day for everything the IWK Health Centre did for our family; but most importantly for the fighting spirit Sebastian and Lucas were born with. I remember people telling us things like "they are so lucky" or "wow, they are little miracles." Chris and I would correct people and reminded them that they aren’t miracles; they and the IWK staff worked incredibly hard for them to get where they are now—happy, healthy little brothers that faced difficulty early on in life and are stronger as a result.
 
Chris and Analia Lowe 
www.alltimelowe.com

 

 

 

 

 

 

 

 

For more information, please read MBC’s Fact Sheet about Twin to Twin Transfusion Syndrome (TTTS). 

Multiple Births Canada 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." See how you can get involved: click here

If you are expecting twins or higher order multiples and are at risk for TTTS, you might like to join MBC’s Preterm Birth Support Network to connect with other families who have had similar experiences. 

Make a Donation - Help MBC to create resources and support families expecting and caring for twins, triplets and more.

www.multiplebirthscanada.org

 

Posted by Lori Oldfield on May 28, 2015

What you should know when you are expecting multiples

Ultrasound pictures (1)

Blog for National Multiple Births Awareness Day, by Jodie Tummers

In July of 2008, after being very certain we were done having children, God intervened and I became pregnant.  On September 19th I went for a scan for Integrate Prenatal Screening (IPS), something I’d never done with my other pregnancies.  I still remember the ultrasound tech saying “I have some news for you… there’s two babies in there.”  I teared up as she showed me the two babies for the first time, but it wasn’t tears of sadness or even of joy… just of disbelief at the amazing thing that was happening.

If you’ve just found out you are pregnant with multiples you can likely relate to this disbelief.  What you might have done, and what I wish I had done, is start googling twins, twin pregnancy and the type of twins you are carrying.  Some people will tell you not to do this, that you’ll just scare yourself unnecessarily.  This blog, this message of mine, is written to show you why they are wrong, why it’s important to be ‘scared’ into educating yourself, especially if you are carrying twins who share a placenta.

 

 

 

 

 

After I found out, I did some reading and research on twins, joined an online support group and generally got informed.  But I always avoided any reading on what could go wrong, because the chances were so low and it would never happen to me.  I always asked if all was okay with my babies after each ultrasound, and the scans did prove to be stressful as each technician had a different feeling about the membrane dividing my babies… it was there/it wasn’t there…. no one seemed 100% sure, but the feeling was that they were “mono-di” not “mono-mono”. 

So that’s the first thing you need to know. Do your babies share a placenta (mono-di) or do they each have their own (di-di)?  If they share a placenta, can a membrane be found dividing the amniotic sac into two sacs or are they both in one sac?  Each type of twins comes with their own risks.  Twins that share a placenta are always much higher risk than those who have their own, because within that placenta there will always be shared blood vessels.  This in and of itself is most often not a problem, but occasionally (in 15-20% of all mono-di pregnancies) this sharing becomes a problem. This is known as Twin to Twin Transfusion Syndrome or TTTS

The sharing of the placenta is also a complication if the share isn’t equal.  This is known as Selective Intrauterine Growth restriction or SIUGR. If the babies are in one sac they are known as monozygotic monoamniotic twins or mono-mono twins, and they are the highest risk level and rarest type of shared placenta twins after conjoined twins, which I won’t focus on in this blog.  Diamniotic dichorionic twins, di-di are the lowest risk level, and I will not focus on them either, as that is not what I have any experience with. 

The complications I mentioned are serious and understanding them is hard sometimes - even for doctors.  Most OB/GYN’s will see one or two cases in their lifetime.  In TTTS, for some reason, no one is really sure why, there is somehow a shift and a transfusion of sorts happens between the babies, instead of between the baby and its share of the placenta.  In SIUGR it’s really something that affects growth of only one baby.  Usually it is because the share of the placenta isn’t equal, but sometimes it is because of the placement of the cords or the number of vessels in it.  These are also important things to ask your doctor about (and request the ultrasound tech put in their report.) What is the cord placement in relation to the placenta and how many vessels does the cord have?
 
Because of these risks, twins who share a placenta MUST be monitored carefully and often.  From 16 weeks on, ultrasounds should be performed every 2 weeks, and doctors’ appointments should also happen that often.  Request to be seen by a maternal fetal medicine specialist if your OB doesn’t have a lot of experience with monochorionic twins. 

Why am I so insistent in these things?  Because I didn’t know, I didn’t have this kind of care, and I was shocked when I was diagnosed with TTTS.  My babies’ best chance was laser surgery at Mt. Sinai hospital in Toronto.  Within hours of diagnosis I was there, and it was there I learned about our poor cord insertion and about how often I should have been seen.  It was there that I had life-saving surgery on my placenta, and it was there that, sadly, we lost one of our boys.  

And it is here and everywhere I can that I will tell my story, so that maybe with the best care, lives will be saved. 

But that’s a story for another post…                         Read Jodie Tummers’ TTTS Story here.

For more information:
Read MBC’s Fact Sheet about Monochorionic Multiple Pregnancy and Twin to Twin Transfusion Syndrome (TTTS). Another Fact Sheet on The Biology of Multiples discusses the different types of twins and multiples, the need for ultrasound diagnosis and monitoring, and the probability of having a  multiple pregnancy.

Multiple Births Canada 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." See how you can get involved: click here

If you are expecting twins or more and are at risk for TTTS, you might like to join MBC’s Preterm Birth Support Network to connect with other families who have had similar experiences. Have you experienced a pregnancy or infant loss due to TTTS or other causes? Join the Loss Support Network.

Make a Donation - Help MBC to create resources and support families caring for twins, triplets and more.

Posted by Lori Oldfield on May 23, 2015

Twin to Twin Transfusion Syndrome Emma & Taylor’s Story

Emma and tyler

On the afternoon of June 12, 2007, during what we thought was going to be a routine 18 week ultrasound, my husband Jeremy and I received the devastating news that our twin babies had Stage III Twin to Twin Transfusion Syndrome (TTTS). We left the clinic in shock and fear, and within two hours were on a flight from Calgary to Toronto to meet with Dr. Greg Ryan at Mt. Sinai hospital.

I had been experiencing back pain of moderate severity and my uterus had gotten quite big, quite fast, however being my first pregnancy and the fact I was having twins, I did not give it much thought. In retrospect, these were warning signs of TTTS.

We arrived in Toronto near midnight and spent a restless night in a hotel near Mt. Sinai. Dr. Ryan met with us early the next morning and spent many hours with us. He extensively examined our babies via ultrasound and even arranged for EKG's on their tiny hearts. He presented information about the disease, the options and the outcomes to us in a direct, honest and caring manner.  The statistics were terrifying. Placental laser surgery was the only chance of survival for our babies so without hesitation, less than 24 hours after our arrival in Toronto, I was in the operating room.

I remember feeling anxious before the surgery, but also feeling such a sense of urgency to have it completed so our babies had a chance to become healthy. The surgery took approximately an hour and a half, and while sedated, I do vividly recall most of it and the miracle of the work being performed. Immediately after surgery, Dr. Ryan met with us and told us he had ablated four main arteries and many vessels in my placenta that were causing the TTTS.  Dr. Ryan was encouraged by the fact that our babies had very strong heartbeats during and after the surgery but he also cautioned us to be realistic... we still had a long way to go. The biggest risk after surgery is pre-term labour so another anxious night loomed ahead. Miraculously, our ultrasound the next morning revealed that the symptoms of TTTS appeared to be slowly resolving themselves. Again, cautious optimism was advised but I was free to travel back home to Calgary where our babies would continue to be monitored via weekly ultrasounds. 

I don't ever remember feeling at ease or comfortable during my pregnancy. The next 19 weeks were excruciating and went by at a snail's pace. Each week, we felt intense anxiety before our ultrasound. Relief would follow when we could hear their heartbeats and see them growing. We always worried the TTTS would come back and it wasn't until October 21, 2007, when we finally got to hold our girls in our arms did we finally breathe. 

We will be eternally grateful to the radiologist in Calgary who diagnosed our girls, Dr. Ryan and his highly competent team for treating them, Mary Forsyth of the TTTS Foundation (tttsfoundation.org) for her knowledge and guidance, our family and friends for their love and support and most importantly our girls for being such incredible fighters. Our miracle babies.

   

 

 

 

         

 

 

For more information, please read MBC’s Fact Sheet about Twin to Twin Transfusion Syndrome (TTTS)

Multiple Births Canada 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." See how you can get involved: click here

If you are expecting twins or higher order multiples and are at risk for TTTS, you might like to join MBC’s Preterm Birth Support Network to connect with other families who have had similar experiences. 

Make a Donation - Help MBC to create resources and support families expecting and caring for twins, triplets and more.

Posted by Lori Oldfield on May 17, 2015

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