Today Shasta tells about her TTTS experience with her twin sons Benjamin and JD. Her story makes me laugh a little because we also had two kids and decided to have another baby and were surprised to find out we had #3 and #4 in there! Thankfully Shasta has double survivors, but that does not mean it was an easy journey. Ironically, her friend was also pregnant with identical twins, but sadly lost both of hers due to TTTS at 19 weeks. Please read Shasta’s story below!
Thank you so much Shasta for sharing your story with us today!
Benjamin and JD
Since I put a 3 year gap between all of my pregnancies, I was told to go ahead and try for the 3rd. So, we did.
At the same time, a friend of mine named Jenny, was just finding out she was pregnant. I was thrilled for her. We share something in common with how horrid our pregnancies are-we both get very severe hyperemesis. It’s where you throw up anything and everything and you can’t keep it down. It feels involuntary and I absolutely hate it. Unfortunately, this makes it extremely hard to want any other pregnancies because of how miserable and sick we are during them. So, when she was about 6 or 7 weeks, she found out she was having identical twins. I was so excited for her. She was miserable though. I thought we were still trying to get pregnant, but little did I know-I was already pregnant as well!!!
That never happened with me before. I knew something was up. About 3 weeks later, I definitely knew something was up-I had to get my pregnancy jeans out. I was only like 6 weeks!!! I ended up having an ultrasound at 8 weeks because I had been to the ER to get re-hydrated at least 4 times by then. I was absolutely miserable as well.
At that ultrasound-the tech asked, “did you do ivf?” Now-I knew she wasn’t really asking me how I became pregnant-she was telling me, I was having multiples. My heart stopped when I asked how many were there and she said she was counting!!! Oh my goodness!!!
At the end of the ultrasound I was told I was having identical twins and that there was a rare disease called TTTS that I should look out for. What?? How do I look out for it? He also told me that it wasn’t a big deal and that nothing will most likely happen. Whew-ok, well if he wasn’t worried then neither was I.
They told her her boys had stage 5 TTTS and there was nothing that could be done. She had to deliver them. I started crying with her-I didn’t know what else to do. I stayed on the phone for a few more minutes and then I told her I would call her back. I got out of bed-it was about 4:30 pm-I was deathly sick that day. It hurt to move-I was so dehydrated.
I googled ways to help a grieving mother. I spent 20 minutes trying to find a good way to help her. I called her back and told her I was bringing over my camera (that I had just bought from her) and I told her that she needed to take pics. I said to her that I read online that it helps to have pics because she won’t have anything else from this pregnancy. She was very happy about that. She knew I was sick and didn’t want to ask. I hurried it over to the hospital and went to see her. We just sat there and cried together for a few minutes.
There was nothing that could be said. She asked me if I thought her boys would be born alive. She wanted more than anything to see them alive. I looked at her and with tears in my eyes I told her I thought they would be. Her boys were born alive just a few hours later. Jax and Rook lived for a few hours. She took lots of pictures and I’ve seen a few of them since then.
2 weeks later I went into the high risk doc and they told me I had stage 3 TTTS. I went to Baltimore a few hours away to Dr. Baschat and I spent another 3 hours trying to figure out how advanced I was. I had a very aggressive stage 3. Dr. Baschat is awesome, by the way. He gave me 3 options. He said I could have an abortion (although he said he wouldn’t be doing that at his office-he didn’t believe in it), I could wait and see or I could try the surgery.
My stomach turned at the thought of ending the pregnancy-even though I was beyond miserably sick (I was throwing up bile). But, I still couldn’t end it. I knew what waiting would give me.
Surgery it was. Surgery was set for the next morning. I went back home to Virginia (a 1.5 hour drive without traffic). My husband and I drove back to Baltimore the next morning. A few hours later I had the surgery. By then, I had stage 4 TTTS. I knew death was stage 5. They even asked if they should do the surgery because I was so advanced and with a 10% chance of getting 1 baby-would it be worth it??
I don’t blame them for asking-honestly, the deck was stacked against us. We all decided that I was already there and prepped and if I had to be on Magnesium I better have something done. Well, the next morning, things were just ok. Nothing improved, but the boys were alive. I stayed in Baltimore for the weekend. I went back with news that the boys were alive, but that’s about it.
So, for the next 6 weeks I was in Dr. Baschat’s care and I drove up there every Tuesday. That was the longest drive ever, and I repeated it for 6 weeks. For the first few weeks-not much was improving. Honestly, I am not sure how they were alive. Jd (donor) barely had amniotic fluid but there was more than before the surgery. My Benjamin (recipient) still had an enlarged heart and fluid around it. After the 3rd week of nothing really improving-I honestly sat there and thought “if these babies are born with these problems, what have I done?” I was scared and I was sad-did I really doom my boys to a life of extreme health problems??
On week 6, I show up for my ultrasound and in the middle of it Dr. Baschat looked at me and said, “I can’t believe it!!! The TTTS has been completely reversed. Your boys are perfectly fine!!” I said what? How can that be? I sat there for about another hour while he checked everything over and over again. He couldn’t believe it. At that appointment, I felt hope. At that appointment, I was released from his care and back to the perinatologist in Virginia. I was 20 weeks then.
A friend of mine who worked in the NICU came down and told us about our boys though. He was their doctor for the first little while. The boys had heart surgery to close their PDA but that was really it. The donor, (Jd), his lungs were shot. He was born at 27 weeks and change, but we were told his lungs were that of a 24 weeker because of how severe the TTTS was.
He struggled. He turned blue several times and when I was there. I remember the first time-he turned blue and his numbers dropped to 0. My husband and I looked at each other and just stared at each other. There was nothing we could do but watch the docs and nurses bring him back to us.
That’s all we did with him for 8 long weeks. We sat and watched. We were too afraid to touch him-when we did, he didn’t like it and would de-sat big time. Benjamin didn’t have such a hard time. He let me cuddle with him after 2 or 3 weeks. I demanded Kangaroo Care with him. My heart needed to heal and I believe he helped with that. After 3 and 3.5 months-I brought them home.
I felt guilty, I felt I couldn’t be too happy because it would upset my friend. I know that’s not what she would have wanted, but its how I felt. And, at the time, I was only a member of another TTTS group and I was always told that I can’t feel sad because they are living.
I was told how dare I be sad at all-I should be grateful.
I was told very cruel things by people. And I let it get to me.
I fought myself for so long. My boys will be 3 very soon and every day I look at them and smile. Every day I see the smiles of those who can’t be here as well. I’m reminded of everything we went through to get them here.
Before I moved away from the DC area, Jenny was expecting her 3rd son. She was in the hospital and her mom was staying and watching her daughter. Her mom said, “I am so glad you 2 are still friends. I know she tried her hardest to push you away and anyone else would have gone away. You didn’t give up on her. She told me the other day how grateful she was you still talked to her. I know you went through a lot as well to get your twins here. She needed to see that so you two could stay friends. She needed to see how hard it really is, she needed to know you fought hard. She loves you as a friend-more than you will ever know. I will miss you and she will miss you so much. Thank you for not giving up on her.”