Twin to Twin Transfusion Syndrome.
One families success story with identical twins and TTTS.
The Importance of Ultrasounds
There has recently been some controversy regarding whether expecting mothers should get ultrasounds. The fact is that everyone should get one, and sooner rather than later. There are a thousand reasons why this is true, but just listen to our family’s story and I think you will get the picture.
My wife Alison and I were very fortunate. The first month we tried to get pregnant, we did. And since we were about as “low-risk” as you can get, we opted for one of Stanford University Medical Center’s mid-wives instead of having a traditional doctor. Their mid-wifery program is tops, and the consensus is that for low-risk pregnancies, it’s a better way to go.
So everything is going according to schedule, except that Ali’s tummy is a little larger than expected. Still, they are pretty sure we are not having twins or anything like that. We are scheduled for the standard 20th week ultrasound, but Ali gets anxious and we end up getting it one week early.
That may have made all the difference.
Not knowing the rules, I had brought our video camera to the ultrasound session hoping to immortalize the first glimpse of our new baby on film. When it came time to start the procedure, I pulled the camera out of the bag and asked if that was OK. Our doctor explained that for liability reasons the hospital does not allow that, just in case something abnormal is found. Then she said, “for instance…”. She was looking at the ultrasound screen when she said that; looking at our baby. Ali was already crying at this point and I’m wondering what the heck is going on, and then the doctor finally finishes her sentence, “I’m seeing two babies!”
That is incredible news, and a real relief after she had startled us there for a second (well, actually just me since I learned later that Ali was crying not in sadness but in joy because she knew she was seeing twins). Ali had always wanted twins, but since there are no twins on either side of our family, we didn’t think there was much of a chance. What we didn’t know was that identical twins are not hereditary. Sometimes the egg just splits, and everyone in the human race has just about the same chance of having identicals because of that.
But then came the other half of the story. Our doctor could tell from a glance that “Baby A” (now known as Ainsley) had a lot more amniotic fluid in her sack than “Baby B” (now known as Sierra) did. That was a quick tip-off to our knowledgeable perinatologist that the girls had a condition known as Twin to Twin Transfusion Syndrome (TTTS). Twins with Twin to Twin Tranfusion Syndrome share their blood supply, and inevitably one of their hearts beats the slightest bit more strongly, creating an imbalance. If untreated, one twin will eventually have too little nutrition (prohibiting growth), while the other will have too much blood (overloading the heart, liver, and kidneys). Either one could die because of this, and since they are connected the second twin is also left with little chance of survival. And even in cases where Twin to Twin Transfusion Syndrome is untreated but both twins survive, temporary or permanent physical/mental damage is likely.
Around 10-15% of identical twins will have twin to twin transfusion syndrome, so it is quite common, but until fairly recently nobody knew what it was. Those children simply went undiagnosed and untreated, usually with dire results. Fortunately, there are now excellent treatments available if the condition is caught early.
The most common treatment for twin to twin transfusion syndrome is called Amniotic Fluid Reduction, and doctors are not sure exactly why it is effective, but it is. The way it works is that they insert a needle (a very large needle, as Ali will attest) into the amniotic sack of the “recipient twin,” the one with the excess amniotic fluid. They extract most of the fluid, and then keep careful observation on the twins, repeating the procedure as often as necessary. The best guess on why this usually works is that the “donor twin,” the one with the stronger heart that is giving away her nutrients, gets all cramped up in the corner by the recipient twin’s larger sack. So when that sack is reduced in size, the donor twin has more room to stretch out and grow. That explanation sounds kind of silly, but I have it on good authority from the medical geniuses at Stanford that this is how it probably works.
So within thirty minutes of our first ultrasound, Ali had the (dis)pleasure of undergoing an Amniotic Fluid Reduction. Again, we were fortunate. The girls responded very well to this treatment, and we only required one other Amniotic Fluid Reduction during the course of the pregnancy, around 26 weeks. Ali was able to carry our twins all the way to 35 weeks (we had been told to target 30 weeks as our absolute top goal), and after a short stay in the NICU (a little over a week), the girls were about as healthy as any newborns could be.
But our story likely would not have had such a happy ending if we hadn’t gotten an ultrasound, and an early one at that.
Recently I spoke with a mom who is one of our customers. She has identical twin boys, and they had twin to twin transfusion syndrome. She only received one ultrasound (at 25 weeks), and her doctor did not diagnose the condition. Amazingly, both boys survived, but they both have physical and mental disabilities as a result of the twin to twin transfusion syndrome. With several years of dedicated therapy, it is even likely that they will be able to reach their original potentials (the healing capacities of young children are extraordinary; I have heard some doctors speak of this in almost magical terms). They are very fortunate, considering the failure of their doctor.
Alison and I are thankful every day for the excellent care our little ones received while they were still in the womb. Doctors make mistakes sometimes (they’re only human), and that cannot be avoided. But what mothers (and fathers) can do is to demand multiple ultrasounds through the course of the pregnancy, and to get them sooner rather than later. It could make all the difference.