Thursday, June 26, 2014

WORRY! & Diagnosis?!

Image credit: Click on the picture to go to
Children's Hospital of Wisconsin's article on TTTS
Following our ultrasound, we did a lot of researching and reading, worrying and praying.  We learned everything we could about Twin to Twin Transfusion Syndrome.  (Twin to Twin Transfusion Syndrome is the result of abnormal blood vessels in a shared placenta.  These blood vessels connect the circulations of the twins causing one twin to receive too much blood and the other to receive too little.  The severity of TTTS depends on the number and type of connections between the twins, and the way the placenta is shared by the twins.)

In our research we we spoke with specialists and fellow TTTS families, people who had been through or were going through what we were going through.  One of the things we had read was a medical study that indicated horizontal rest and the consumption of high protein shakes positively influenced TTTS outcomes.  I put myself on "bed rest" and started eating as much protein as I could and drinking high protein nutritional shakes.  It felt like these were the only things I had control over, as far as being able to DO something for our babies, so I had to do it.  As I lay in bed, willing every possible nutrient to the placenta, I read and read and read about TTTS.

Five days after our first ultrasound, we had a follow up ultrasound (one year ago yesterday).  Our doctor scheduled another one again so soon because he knew that TTTS can progress quickly, and he was that concerned about our babies.  We had further researched TTTS and had printed out important questions to ask that we found HERE and had read the explanations HERE.  These questions and the explanations helped us to obtain important information from our doctor and the scan.  Unfortunately our scan revealed that we were not one of the cases where TTTS would stay at Stage I, or never show it's face.  Our baby A's fluid was further reduced.  It no longer fell in the "normal" range, but baby B's fluid was still "normal" though again on the highest end of normal.  Baby A's bladder was still visible (which was a good sign) but it was just a sliver.  Our right upper twin's doppler reading (the reading of the blood flow in her umbilical cord) was abnormal.  It showed "absent diastolic flow".  It meant that her heart was not working properly, likely due to the excess blood she was receiving via the shared connections of the placenta.  Our doctor recommended we get in touch with specialists ASAP and prepare ourselves for the possibility of surgery by the end of the week.  He felt that the abnormal doppler readings qualified us for a Stage III TTTS diagnosis... though our fluid levels didn't fully qualify us for even stage I.

Our kind doctor (whose caution, and compassion were such a blessing to us) contacted specialists in LA and spoke with them about our case.  The specialists felt we didn't need to rush into surgery (as the surgery is very risky itself, with a 10 to 15% chance of going into labor and loosing both of our precious babies).  The next day (a year ago today) we had our first appointment with our Maternal Fetal Medicine doctor, a specialist in high risk pregnancies.  She did another ultrasound and again we saw the abnormal doppler readings.  She also felt that what she was seeing qualified us for a Stage III diagnosis, and processed a referral to specialists in San Francisco.  We went home and researched again.  I felt my heart sinking as we again fell into a minority percentage, only 10 to 15% of identical twin pregnancies develop TTTS, 10 to 15% of .003% ... .  It sunk further when I read that absent diastolic flow is connected to a high mortality rate.  When the specialists called the next day (Thursday) they scheduled an appointment for us for early Monday morning.  I expressed concern at the length of time before we would be seen.  Waiting over the weekend felt too long ... after all, we were at Stage III, Stage IV is heart failure, and at Stage V one or both of our precious babies would be gone, I didn't want to get to either of those stages ... but the nurse assured me that it is her job to determine the urgency and that they don't usually see absent diastolic flow in the "recipient twin" but more commonly see it in the "donor twin" so they weren't sure that TTTS was the culprit in our case but that they would be able to identify whatever was causing it when we came in on Monday.

Another step in our research was to talk to Dr. De Lia, a pioneer in the field of laser ablation surgery to treat TTTS.  Dr. De Lia expressed optimism that as I continued horizontal rest, and nutritional shakes over the weekend we may see the absent diastolic flow disappear.  He felt strongly that we had a good chance at seeing improvement at our next scan.  We felt good about going to San Francisco on Monday and gathering more information about our situation before making a decision about surgery, whether to have it and where to have it.  However, when Friday came I felt VERY ANXIOUS again.  Oh, how I wish I would have insisted on being seen sooner ... I don't know if it would have made a difference in our outcome, but it would have removed a "what if?" 

This weekend, last year, I was on strict bed rest, getting up only to go to the bathroom and to shower, I was drinking at least 3 high protein Boosts or Ensures a day.  I was praying, reading a lot, worrying a lot, having my kids visit me in my room, and messaging with other TTTS families.  I was also searching familysearch.org for family names, feeling an increased urgency to choose names for our sweet girls (we usually wait until we meet our babies to decide for sure on a name, but with this pregnancy, it felt like they should have names as soon as possible).

This weekend last year I was hoping that Dr. De Lia was right and that come Monday morning we would see a normal doppler study for our recipient twin, and that our donor twin would still have a visible bladder and a little more fluid.  I was doing everything I could for my babies, and hoping and praying for a miracle.

1 comment:

  1. Thank you for sharing your story! I look forward to reading your future posts.

    ReplyDelete