Five years ago today I left my house for work and then some appointments to check on my twin babies completely oblivious to the ticking time bomb inside of my womb.
Five years ago today I heard the words Twin to Twin Transfusion Syndrome and my world was tilted on it's edge.
Five years ago today I met the amazing staff at Mount Sinai Hospital and, although I was scared I knew that this life saving procedure was in the hands of very capable doctors and felt reassured that my sons would be ok.
Five years ago today my life was forever changed.
In two days we will honour the lives of our sons and remember the day that we learned one of them would not come home by travelling to see this man, Dr. Ryan, and present him with over $6000. Please consider donating to our cause in honour of Cameron and in memory of Cole.
It's hard for me to believe that it's been 5 years. Even harder for me to believe is how much my life has changed and how much knowledge I have gained in 5 years.
And that's what I want to write about today...how gaining knowledge of what happened helped me find peace...and how that might help you too.
Five years ago yesterday I had only vaguely heard of TTTS. I knew someone who's nephews had been born over 16 weeks early because of it and knew that one of them had died. I knew it had something to do with the size of the babies not being the same and maybe something to do with fluids. I didn't bother reading that section of the twin book, it wasn't going to be me so why did it matter???
In the days that followed the events of 5 years ago I learned much much more about TTTS. Unfortunately what I learned then made me so much less peaceful, so much more guilt ridden... and that lasted for a long, long time.
On The TTTS Foundation website I found this...
Confirm at First Ultrasound (Hopefully by 12 Weeks)
1. Is the placenta monochorionic?
2. Are the babies the same sex?
3. Can you see the dividing membrane?
4. Is the placenta anterior or posterior?
5. Do the cords have 3 vessels or 2?
6. Are the cords fully attached to the placenta?
Ask at Weekly Ultrasounds (Starting at Week 16 to Delivery)7. What is the largest vertical pocket of fluid for each baby?
8. Can you see the bladder of the donor baby?
9. What are the weights of the babies in grams?
(every 2-3 weeks)
10. Are the dopplers normal for both babies?
11. Is the heart of the recipient baby enlarged or thickened?
12. Does the recipient baby have hydrops?
13. What is the measurement of your cervix, is it long and
closed or thinning or dilated?
14. Is the smaller baby growing at the same rate?
15. What is the fundal height?
And I raised so much guilt...there was so much I didn't know. I never asked any of these questions really. I had no clue I should have had ultrasounds every week... the rate I had them (every 2.5-3 weeks) was pretty much unheard of in most of the twin sites I was a member of. I knew there was one anterior placenta and that's about it.
I read other things on this site that made me feel more uneasy at all I hadn't done. Didn't go to the right doctor, didn't have ultrasounds often enough, didn't lie on my left side or do bed rest when possible, didn't drink 3 boost or ensures a day. All of these things seemed to be what others had done..others that still had both their babies. It was so hard to live with myself at times.
But then I had to take myself back to what I did know, the facts that I did know for sure that were gathered and presented 5 years ago tonight.
* I had not had ultrasounds every week but I had them every 3 weeks or less and in every one the boys were a similar size and had similar fluid levels. I did ask about size discrepancy as at one point they were 5 days apart in size... the doctor smiled and humoured me I think... 5 days difference was nothing to worry about at all, if they became more then 25% different then they would be worried.
My boys, at diagnosis, were almost exactly the same weight. Cole, our recipient, was actually 45 grams less and since he was the one getting the extra they knew that TTTS had not been happening long.
* My boys had fluid levels of 8 cm and 0.5 cm. Cameron had no visible bladder. TTTS causes excess fluid to build up in the recipient's sac and causes the donor to be shrink wrapped in their amniotic sac. Cameron was getting there but Cole was not in excess, not technically. We were barely a stage 2 for fluids though we did have doppler readings for Cole that were concerning enough to move us to stage 3.
* I was asked repeatedly if I'd noticed any rapid weight gain...I had almost none, maybe 0.5-1 lb per 10days to 2 weeks. Did I have any pain on one side? No. I didn't feel like I was going to burst either and I hadn't noticed any decrease in movement.
Our doctors assured us that these answered showed that TTTS had not been happening long...we caught it early and we could fix it. Cole had some very minor heart concerns but everyone was very confident.
And I guess that is why the news of two later was such a shock. That is why I went back to all I didn't know, all I didn't do. There was no peace in that.
After my water broke I had a lot of time to ponder what had happened and I had a lot of time to research and learn. I learned terms like olyhydraminos, polyhydraminos, MCA dopplers, umblillical dopplers, learned about pocket sizes, cord insertions and what a velamentous cord insertion was. I began to ask about placental share when I was told that about 1/4 of the placenta in my body was rapdily deteriorating but the rest looked good. This helped but I still came back to those protein drinks, that left side rest, those frequent ultrasounds.
On the day the boys were born I asked to see the placenta. My doctor, a fellowship doctor named Hayley, was amazing. She showed me where the laser had ablated the vessels, she showe me how far off Cole's cord was and she showed me how little of the placenta appeared to be his... it was dark and almost rotten looking but Cameron's side, over 3/4 of the placenta, looked healthy.
In the months after we finally came home I really struggled. I needed to understand what happened, needed to know we had done all we could. I was very fortunate and was able to get a copy of all my antenatal records from Stratford General as well as all reports, including the surgical one, from Mt. Sinai. I read them, over and over and over. Some of it made sense but much of it didn't.
By this point I had come to rely on my friends at Fetal Hope to help me make sense of many things both while I was in hospital on bedrest and after I got home. Lonnie had me fax all the reports to him and he went through them page by page and told everything that was there. It became very clear when we read them that all that could have been done ahead of time was done. There were no signs, there were no reasons to suspect the cord insertion issue, Cole grew fine all along. It also became apparent that when they got inside of me they knew they were dealing with a different scenario then they had thought from the ultrasounds. There were more vessels then they figured, they cord insertion looked really bad. Dr. Ryan did a septostomy in the dividing membrane so that he could be 100% certain that all vessels were ablated and written as a reason...'due to the severe velamentous nature of twin a's cord we felt it necessary to do a septostomy to follow all vessels and ensure all connections were indeed ablated'. I think he knew...
And so my learning curve steepened. Now I knew about my own case and how little chance that anything being done differently would have changed our outcome for the better. But did I understand what it all meant and could I apply it.
I began to research all that I could on TTTS, cord insertions, mono-di twins, tests like MCA dopplers, cord flow, IPS screening and nuchal folds... and what having different results in mono-di twins might mean. I learned about fetal anemia and intrauterine blood transfusions (yet another rare procedure we had done). I learned about average rates of progression (there really isn't such a thing), I learned about the recommendation for ultrasound from other websites/foundations.... 10 days to 2 weeks is much more standard. I asked foundation founders, doctors, nurses and nutritionists about protein and more specifically boost and ensure. I asked Dr. Ryan about this subject a few times over the years and he's given me some great info on the subject, confirmed the findings of other medical professionals and so I felt VERY comfortable with the fact that I didn't need those, that they would not make a difference to anyone really
I began to gather a group of online friends (and later this week I just might do an up to date count but at last count it was over 175 of my 700 friends were TTTS related) who understood all these terms and were eager to learn more.
And in time I felt comfortable enough sharing my story with others and actually answering their questions. I found peace in what I knew, I found comfort in the knowledge I had gained.
There will always be questions, always be a few what ifs but all in all.... knowledge is power and knowledge is peace.