TTTS Tuesday - Benjamin and JD's story

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

I already had 2 older girls when we decided to try for 1 more baby. We figured after 1 more, we would be done. 🙂 I also knew that my previous 2 pregnancies had ended horribly and a little on the early side. The early part wouldn’t have been an issue, but with my oldest I had a rare side effect because of the epidural I had to get to lower my blood pressure. Well, she was born dead (and was revived after-I’m not sure how long it took). So, she was in the NICU for a little while because of that. I knew I ended up with pre-eclampsia but also every doctor kept telling me that most women get that and usually it doesn’t repeat.

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!!!

I woke up after a random dream one night. In my dream, I walked into the bathroom, took out the pregnancy test, and it immediately turned positive-there was no waiting period. Well, after I woke up, I walked into the bathroom, found the pregnancy test in the exact place I dreamed it was and took the test. By the time I put the test on the counter-it was very positive-there was no waiting.

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.

Jenny and I continued to hang out-she was 4 weeks ahead and our miserable selves kept us entertained. I would go over there with my then 3 year girl and her 3 year old daughter would play and drive us nuts while we laid on the couches and watched tv together. 🙂 Misery loves company, right? One day, Jenny called me and told me she was in labor-she was 19 weeks. We both laughed becaus
e I told her how miserable it would be to hang out in the hospital for the rest of her pregnancy. She went for an ultrasound and I called her back because it was taking too long. She was crying and very upset.

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.

I called my ob about 3 days later and demanded to see a high risk doc. It took 3 days because every time I thought of doing anything I just sat and cried. During those 3 days-I fielded the questions from people in our church on how to help. Everyone called me and asked me what to do and I did it-I needed to. I was so sad but I helped out.

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??

Well, I went for the 4th and 5th time. Still things were the same. I hated that drive more than anything. Traffic around DC is horrid and did nothing for my mood. But, I was still pregnant while Jenny wasn’t so I decided that I would take on whatever happened. I was grateful and that was that.
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.

At 23 weeks, there was evidence of reverse flow. I was admitted into the hospital that day. I sat in the hospital for 4 weeks during the swine flu scare. My older girls couldn’t see me except for on Sundays. Once a week, I was allowed to see them. I didn’t get many visitors. When I was 24 weeks, Jenny called me and asked how she could help us out. I was shocked. Up until then-she kept her distance. She was battling extreme depression and couldn’t even bear to look at me. So…imagine my surprise when she called me. I asked why she wanted to help. She said, “I am praying your boys aren’t born now. I don’t want you to lose your boys as well. I am praying they will live.” I was stunned into silence. She cared. She maintained her distance, but she honestly cared. She didn’t want me to go through a funeral like she did. She cared. My hope was straight back up in the sky. She watched my 3 year old girl until my husbands mom could get there a week later.

At 27 weeks 5 days, I had my boys. It was an emergency c-section and I was put under. I kept asking if the boys were alive when I woke up. I just needed to be reassured. I couldn’t go see them.
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 ho
me.

I was on my own because my husband used all of his time because of everything that had happened. I was exhausted and was still battling myself.

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.”

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katbiggie

Freelance writer at Kat Biggie Press

Alexa B, who blogs as "Kat Biggie" is a wife, mother, and writer. She has three children and one in heaven. She recently self published a book entitled "Sunshine After the Storm: A Survival Guide for the Grieving Mother" which is available on Amazon. She blogs about life after the loss of one of her twin daughters to TTTS, motherhood, all things parenting, advocacy, grief support and social good.