The day I took this photo, I had gone to dinner with two of my best friends. I was so distended already from the TTTS that I could barely walk or even get comfortable, turns out I had an extra 2 plus liters of fluid in my abdomen due to the twins transfusion. I was at week 20 and I went to my anatomy scan. My belly was huge for being only being half way there; I was really uncomfortable and in a lot of pain, but clueless as to why.
Only about 60 seconds into the scan, the ultrasound tech turned to us and said causally, "So you are having twins." Clearly we did not nor did we know how our life was about to change.
This is an email we sent as to what followed from that pivotal point in our lives:
"Dear Family and Friends,
We hope this email finds you all happy and healthy.
Mark and I wanted to reach out to you and share some sad and simultaneously joyful/hopeful news. We hope this email will bring clarity and this gives us the chance to share without blindsiding anyone that we have not seen in a while. We have tried to reach out to many of you, but with this situation and series of events, we weren't able to communicate with everyone who is important to us. We hope this email will shed some light, plus, this process is cathartic for us right now.
A little more than a week ago, our world was turned upside down. We were expecting a healthy baby boy in mid-November. All previous appointments were smooth and all looked great. At our 20 week appointment, the doctors did the routine anatomy scan where they check the baby from head to toe.
Within minutes of the scan, the tech turned to us and said, "so you know you are having twins?" Obviously, we did not and we were shocked and in awe. We then had over 2 hours of the scan in which we had the chance to process the shock but also become extremely excited about having twins; identical twin boys! We were over the moon even while trying to figure out how we would fit a double stroller in the Subaru and how many diapers we would need to buy at Costco ;)
Unfortunately, things changed pretty drastically for us once the perinatologist came in; we knew something was wrong by her intensity. We were told that our twins were suffering from a rare syndrome, called "Twin Twin Transfusion". Twin-twin transfusion syndrome (TTTS) is a rare, serious condition that can occur in pregnancies when identical twins share a placenta. Abnormal blood vessel connections form in the placenta and allow blood to flow unevenly between the babies. If we did not seek surgery quickly, we had a 95% of losing both of them. Needless to say, we were devastated and again in more shock.
We drove up to LA on Monday, the 27th, my birthday, unfortunately, and were seen by the most amazing medical specialists in this field. People come from all over the country to them for these crisis situations. We were at stage 3 of the syndrome and the twins both were having complications. Here is more on the syndrome and center is you ever want to know or know anyone who has this condition:
http://www.losangelesfetaltherapy.org/conditions/twin-twin-transfusion-syndrome.html
Surgery was set for the next day and our only chance we had to save them. We were given a 50% chance that one twin would survive and about an 80% for our other guy.
The surgery went as well as could go; the team again, was amazing, we can't say enough about them! I got to see both of my boys on the screen during the surgery, which brought peace and comfort. The doctor was able to ablate the vessels and eliminate the transfusion that was causing the problem, so we were hopeful.
Unfortunately, the next day, during the follow-up ultrasound, the team shared the heart-wrenching news that our one twin, Twin A, the recipient twin, had passed due to heart complications, etc. We cried a lot and we still do for now. Twin A will remain there by his brother until birth. Both babies made sacrifices for one another which is difficult to swallow and amazing at the same time.
Our Twin B, the donor baby, was looking quite sick and the doctor said the next 30 days were crucial for him. We left LA heartbroken and very scared.
However, we are happy to report that our fighter baby, as of Tuesday is making a great comeback! The perinatologist was really encouraged and gave us the hope we need to keep hanging in there. We will have to be seen every week now to monitor the baby and other complications that can occur. Every week that passes is a new milestone for him and us. Miraculously, he went from 8 oz prior to surgery to 11 oz; a big win!. Due to the syndrome and surgery, we are considered a high-risk pregnancy, so we are taking it easy and eating lots of yummy food and homemade ice cream that friends and family have brought by! There is a good chance that this little man will come early, but for now, we take it day by day.
This has all occurred within a weeks time span, so it is a lot to digest for anyone. We have a long road ahead but we can't thank you all enough for your support, thoughts, prayers, kindness, and love. We are grieving while trying to remain hopeful and positive. For Mark and I, having the support system of you has made this time a little smoother and it is healing for us to speak about it. It also allows us to honor the life of our little son."
