Note: Since I decided to consolidate my site into this one blog, thought I would go ahead and repost this article that I wrote some time ago...
Josie & Anna, together again for the first time since the womb, at 10 days old. Born 10 weeks early due to complications from TTTS. Josie was the "donor twin"... Anna the "recipient twin." Birth Weights: Josie, 2lbs 12oz & Anna, 3lbs 15 oz. (They were wearing preemie-size clothes in this photo.)
TTTS stands for Twin-to-Twin Transfusion Syndrome. It is a condition that affects some identical twins in the womb. When the twins share a placenta (as is very often the case with identical twins), sometimes they will do so unequally: one twin will receive too much of the blood/nourishment from the placenta, while the other receives too little. In fact, blood from one twin (the "donor twin") is actually diverted into the other twin (the "recipient twin").
This condition is very dangerous to both babies. Many do die and, those who do survive, sometimes have lasting medical conditions....
There is hope, though! Many do survive and go on to be perfectly happy and healthy babies. But awareness is key!
Why is it so dangerous?
It must be noted that TTTS is a disease of the placenta, not the babies. Babies affected by TTTS are completely normal. It's simply a matter of making it through the pregnancy. However, due to the babies not receiving an appropriate amount of blood from the placenta, they are both in danger: the "donor twin" can suffer from anemia or simply fail to develop. And, the "recipient twin" can suffer from heart failure.
TTTS affects approximately 1 in every 1000 pregnancies. Despite that, though, it is not a widely known or understood condition.
Our Story...
At 27 weeks, I went in for an ultrasound, and it was shown that Anna was a few ounces heavier than Josie. It was shrugged off at the time as just the normal differences in size that can occur in twins. Afterwards, I did start to notice that the right side of my belly (Anna's side) was getting bigger than the left. However, I figured it was just the way she was laying.
Then, a week after the ultrasound, I woke up in a puddle, went to the emergency room and was told that my water had not broken. However, I was dilated 1cm and put on light bed rest. The doctor on call said that the fluid that I was leaking was probably just the babies pushing urine out of my bladder. They did like to kickbox it!
Over the next 10 days, I continued to leak fluid and get more and more uncomfortable. I had so much blood running through me that my cheeks and lips had a permanent red stain, I was getting nose bleeds at least once a day and I could actually hear the blood rushing in my ears. However, I just chalked it all up to the extra stress of carrying two babies at once. (As did my OB, when I saw him a few days after my emergency room visit.)
Then, while eating dinner, 10 days after my visit to the hospital, my back started to hurt. Over the next hour or so, the pain and pressure started to get worse. I still didn't really think that I was in labor, but I finally told my husband that I wanted to go to the hospital, again.
By the time we arrived at the hospital, the pain/pressure had started to feel more cyclical in nature. And, while waiting to get checked in, I began to shake...
I figured at first that I was just nervous because now it really did seem like I was in labor. However, as it turned out, I had a 102 degree fever. Apparently, an infection had set into my uterus due to my water having been broken for several days. And, due to the infection, I had to have an emergency C-section, even though my girls were in the right position to be born vaginally.
I have to admit that I was so grateful after they numbed me... shaking uncontrollably from fever while having labor pains is probably the most unpleasant thing in the world (at least the most unpleasant thing I've experienced :-p) The babies were born in what seemed like no time and then whisked away while I was in a drug/fever-induced haze. Luckily, I didn't know everything that was going on at the time... I actually had this complete confidence that everything was going to be just fine.
However, while Josie was doing pretty good, even though she was just 2 lbs. 12 oz., poor Anna at 3 lbs. 15 oz. scored a 0 on her initial APGAR test and had to be put on a ventilator.
The girls have completely recovered from their bout with TTTS, though. Anna only needed a few days worth of help with her breathing and, while she was very red for awhile due to all the extra blood she had received, that went away with time, as well. Although, she did have to spend a few days under the black lights for jaundice.
As for Josie, she had to take some iron supplements for a little while and, had a slight heart murmur, but all of that cleared up on its own, too. They actually only had to spend a month in the hospital, even though they were born almost 10 weeks early!
We were extremely lucky... however, many are not so lucky. And, while sometimes there is nothing that can be done in cases of TTTS, many times there is. Unfortunately, though, it is such a little known condition, that many medical professionals don't even think to look for it.
The Importance of Awareness
It actually took me several months, and lots of research, to finally put all the pieces of the puzzle together and understand exactly everything that had happened and why. Things like the right side of my belly getting bigger was due to a buildup of excess amniotic fluid in Anna's sac, which often happens in cases of TTTS. It also helps to explain why the doctor I saw in the emergency room 10 days before the birth, missed the fact that my water had broken (by the time I arrived at the hospital, both babies once again had an appropriate amount of amniotic fluid... at least that's my layman's theory on how it was missed.)
I can't say for sure that, even if my doctors had caught the TTTS, that the eventual outcome would have been any different. I do think at the very least, it could have been much less traumatic for both me and the girls. I also know that I shrugged off a lot of things, because I trusted my doctors, when they told me everything was just fine.
I do not in any way advocate frivolous lawsuits against doctors. While I do believe mistakes were made, in the end, we had no damages, so we simply count our blessings. Also, doctors are not miracle workers. Sometimes, it can seem that they are. I believe the people that saved Anna, after she was born, qualify. However, sometimes bad things just happen and it isn't anyone's fault.
However, I do advocate staying very aware of what is happening with your own body and trusting your own instincts. Also, I do believe there needs to be more awareness within the medical community of this disease and, I believe that the possibility of TTTS in twin pregnancies should be thoroughly investigated. The more you know and the earlier you know it, the better your chances for a happy ending.
Related Links:
Fetal Hope Foundation
TTTS Foundation
Miracles of Multiples
Twin-to-twin transfusion syndrome (Wikipedia)
Twin to Twin Transfusion Syndrome (TTTS) (University of Maryland Medical Center)
Twin to Twin TransfusionSyndrome (TTTS)(American Pregnancy Association)
Twin to Twin Transfusion Syndrome (UCSF Children's Hospital)
Twin-Twin Transfusion Syndrome (TTTS) (Texas Children's Hospital)
Posts
4 comments:
I loved the description of your story and it gives me a little bit of hope for my own situation. We too have TTTS, they found it at 16weeks... I have been very lucky because I have been referred to some excellent top notch doctors. So I have had 4d ultrasounds and were able to catch the smallest difference in fluid. I went back one week later to find that one baby was stuck in a corner while the other's sac was taking up 80-90% of the womb... Right now Im only at 18 weeks, and am on bedrest. I constantly worry about my little babies but I know I'm in great hands. I love how you are trying to bring awareness to the disease because there is very little information known. They can perform a laser surgery now on the placenta which I may have done in a few weeks. But there is no information on how we get it or how we can increase our chances to make it to full term... I have been told high calorie and high protein diets can make the condition better but for me that doesn't seem to be helping... Glad your girls are okay! I plan to order you book too!
Shannon,
The laser procedure is about the only hope your twinz have of survival. Please, please contact Dr. DeLia in Milwaukee TODAY. I cannot stress this enough. Your Twinz are in mortal danger. Our hearts go out to you, your babies need the best care. Dr DeLia in Milwaukee or Dr Cromblehome in Cincinnati are the most experienced TTTS doctors in this country, and will respond to your inquiry. Please don't delay contacting either or both of them for information and analysis of your condition. Please let us warn you that this condition is murderous in its progression, things can de-stabilize with astonishing speed. A good ultrasound can be followed in 3 days by the death of a baby, as happened with our son Morgan, our recipient twin. This event was at the beginning of week 25, in the middle of a very well-observed course of Amniotic Fluid Reduction therapy. I was not judged to be a good candidate for the laser procedure by HanMin Lee at the UCSF hospital (we are in San Jose, CA.). It is said that hindsight is '20-20', we wish that we had sought out a second opinion. I continued to carry Morgan and his twin Brian through weekly ultrasounds and twice-weekly Non-Stress tests in addition to 3 separate stays in the hospital of a few days each when on the 29th of september a bad non stress test result brought about Brian's birth by emergency c-section. He had severe respiratory distress, and despite the valint efforts of the top-notch NICU team at Good Sam here in San Jose, he died late in the morning of October 2nd. I lost both my sons, Shannon, and caution you that that the same could happen to you, as happens in the vast majority of ttts cases that do not receive the Laser Ablation treatment. Please contact us tealeaflist@hotmail.com we want to know that you are getting the information that you need to maximize the chances of your babies being born alive and healthy. My sorrow is amplified by the fact that there are thousands of women that don't have a clue about how deadly this condition is. Please don't be the next one of them like us, our boys are now just statistics.
With Love & Respect,
Danielle Smith,
Michael Overby, parents of
Astrid Jamie Jean Overby, 4 years,
Morgan Mark Aaron Overby, and
Brian Raymond Lee Overby, Taken by TTTS
My girls were born at 35 weeks and one was highly anemic while the other was toxic with the excess blood. Both babies were taken to NICU and given transfusions. Their hematocrit levels at birth were 15 and 57. They were big and strong though and recovered quickly. The recipient was home in 7 days and the donor in 12. They are now 17 years old and sometimes drive us crazy because they are so strong willed and determined, and not always in the direction we would approve. I always remember the wise nurse who told me to go home and rest and brace myself because babies who are not strong willed don't survive what my babies survived. I will never forget those first few days with my babies in critical condition and almost losing my donar baby. We were very very lucky that the disease happened very late in the pregnancy because the placenta was initially only fused by microscopic cells and only became a problem in the last few months. My toxemia was what triggered the evaluations and emergency C-section, not knowing of the ttts until after the delivery, and it wasn't until I was pregnant with their little sister at age 40 and worked with a perinatologist until I fully understood the disease as my doctors, wonderful and trained people, did not know the particulars of the disease. I am thrilled to learn there is a procedure for those who suffer this early in the pregnancy and have no other chance for survival. These awesome little people all deserve the chance to live, laugh, and love. Almost 18 years later, I'm still eternally grateful for my twins' great outcome, and when they are driving me crazy being teenagers, I still have to stop and smile to myself because we came so close to being robbed of this whole opportunity. Hang in there twin moms and dads and advocate for your little treasures.
What a touching story. My twingirls are survivor of TTTS. I got diagnosed with stage 3 TTTS at my 24week scan and needed to have laser surgery and reduction of amniotic fluid the very same day. They were born at 32weeks weighing both 3.3lbs ;)
x Nicky
Post a Comment