Trigger Warning: Infant Loss/Miscarriage/TTTS
October was Pregnancy and Infant Loss Awareness month. Last year, I spent days mulling over my story. It is healing and heartbreaking to try to put your pain into words, Yet, in doing it, we all hope that others may feel a sense of support. I am constantly amazed by the strength of this woman. Virginia Dow is a close friend of mine who recently met her sleeping twin boys. Her courage inspires me. As she tells her story I hear her voice and know her struggle is so recent, real and raw. I hope that Virginia and Shane’s story continues to raise awareness for Pregnancy loss as well as twin to twin transfusion syndrome.
This is the story of Larson and Emmett:
Molly has the joy of helping women through pregnancies, labor, and postpartum adventures and I have the joy of knowing Molly through my husband. Our husband’s are best friends so our lives will forever be entangled whether we like it or not. (We do like it, by the way.) She has asked me to share my story about my second pregnancy and I am happy to do so to spread awareness for Pregnancy and Infant Loss and Twin to Twin Transfusion Syndrome.
July 18, 2016.
This was the day of my first ultrasound appointment for my second pregnancy. I was a little over 10 weeks along and had waited to see the OB to get a better appointment time around my firstborn’s naptime. My previous pregnancy was a breeze, all things considered. No complications, spontaneous labor, and a vaginal delivery, so I wasn’t too concerned about waiting to be seen.
That morning I had felt like I “popped” out, so to speak; that pregnancy phase of looking fat because you don’t look skinny, but you still don’t look pregnant either. Around 6 weeks, anything tight around my stomach made me nauseous. If I didn’t eat frequently enough I was nauseous too and definitely had some strong food aversions. All things, I had thought, were pretty normal for a second go-around. Then I had my ultrasound.
My husband is an Air Force pilot and his job requirements rarely allow him to accompany me to things, including this appointment, but I was able to Facetime him in. It was nice to not have to relay everything the doctor said.
The tech started scanning and said something to the fact that the baby looks good and then went quiet for a second. She looked at me and said, “Do you see what I see?”
I thought, “Well, I see a lot of things, but I’m not a pro at reading a scan like you are so I mainly see a bunch of black and white.”
I said, “No?”
“There’s TWO in there!”
“What? Are you serious?!” That’s all I could say. We both started laughing and I cried tears of joy. Excitement.
Ok, maybe terror; but definitely joy too.
Twins didn’t run in either side of our family, so we were pretty shocked.
The rest of the appointment went by in a blur: phone calls to family members and a Facebook post about how we needed to adjust our pregnancy announcement from one baby addition, to two.
We were so happy. We started making arrangements in our house for two cribs, upgraded our small SUV to a minivan, bought a second infant car seat with a double stroller. You know, typical things you need to prepare for, especially if your husband is potentially deploying. You get what you can get done-in advance.
I had to see an OB and a Maternal Fetal Medicine (MFM) specialist because all “multiples” pregnancies are considered high risk. This seemed like no big deal. Extra ultrasounds, right? All good things, until we had talks of Twin to Twin Transfusion Syndrome (TTTS.)
TTTS is a disease that can affect 15-20% of all identical twin pregnancies and my twin boys, Larson and Emmett, were starting to show signs. The twins were sharing a placenta, but had two amniotic sacs. This makes it easier to diagnose TTTS than if they were sharing the same amniotic sac. The biggest signs of TTTS are fluid discrepancy, growth discrepancy, bladder size and visibility, and heart distress. TTTS is caused by blood vessels being connected on the placenta-causing one twin to donate to the other with little to no nutrients being returned. Emmett (our donor) was sharing too much with Larson (our recipient) and Larson wasn’t giving anything back.
Stage 1 is where the fluid and weight may be different, but not by much, and Stage 5 is where one or both babies are lost due to heart failure. Most identical twin pregnancies that develop Stage 1 don’t progress past it. We stayed at Stage 1 for a couple weeks, but at 17.5 weeks we were showing signs of Stage 2, further growth and fluid discrepancies. Our MFM doc referred us to the Fetal Center in Houston to find out if we were candidates for fetoscopic laser ablation surgery. This surgery would sever the blood vessels connecting the babies and allow the babies to continue growing separately. This would stop the donation of nutrients from Emmett to Larson.
Our consultation showed us at Atypical Stage 2. Fluid levels and growth were a bit worrisome, but their bladders and hearts looked fine. They wanted to see us back in a week. You see, the doctors try to delay the surgery as long as possible because there are several risks involved, especially if it’s early in the pregnancy. Putting it off one week or longer was hopefully buying us days/weeks more gestation time.
I was told to keep my MFM appointment the following week and my scan showed more severe discrepancies between the boys, but again, bladders and hearts appeared normal. I was told to expect surgery following my consultation in two days. This whole time, we had been sharing our complications with close friends and family. These people, their families and church families were praying for us. I was going into this trial knowing we were being lifted up in prayer and knowing God was on our side. What could happen?
September 14, 2016
51 hours later, we made our 4+ hour trek back to Houston and had an ultrasound. We had a different ultrasound tech this time. She wasn’t quite as personable as our previous one, but that was ok, until she was quiet. And the monitor was quiet. And I was asked to hold my breath. And we weren’t seeing Larson dancing in his excessive fluid like usual. She left the room without saying anything. I told my husband-something was wrong. I had too many ultrasounds at this point to not know. The tech brought a doctor back. He asked to take a look, of course I said yes. And then he said the most horrible words I’ve ever heard in my life.
“I’m so sorry to tell you this, but your babies are gone.”
He said some other things, but I don’t remember much other than him leaving the room to give us a few minutes. He eventually came back to scan my once beautiful belly, holding two wonderful little boys, to say that some time in those 51 hours, we had gone from Atypical Stage 2 to Stage 5: Acute TTTS. I would have to be induced and birth my babies. Even though they were gone, my body had no idea. I wasn’t bleeding or cramping like a typical miscarriage. We left the Fetal Center very differently than when we entered.
The day after we drove back, I was seen at the OB and scheduled to be induced 5 days from when we found out we lost them. 5 days I was pregnant with babies that had no heart beat.
I couldn’t stand the sight of my body.
It was betraying me.
I looked pregnant and full of life, but I wasn’t.
I could feel movement inside me,
but it was my own body moving their small ones around.
I had this huge round belly serving as a living tomb.
I felt so empty while I looked so full. I refused to shower.
I didn’t look in mirrors.
I didn’t want to see the lie my body was telling me.
My heart and soul screamed out to God. WHY?! WHY us?!
I had read all the success stories of couples that had struggled with TTTS, the surgery, hospital stay, and NICU time, but still, their babies SURVIVED. What had we done to deserve such a punishment of losing, not one, but two children? But then I remembered, we are all a part of a fallen world, broken, and sin filled. God didn’t cause this. He loves Larson and Emmett more than I can even imagine and even though He knew it would happen, He provided for us. He provided that my husband was with me when we received the news. He provided an understanding and caring medical team during the whole pregnancy and birth. He provided a work environment for my mom so she and my father could fly down to be with us. He provided two identical spider lilies to grow together outside of our older son’s room as a sign of Him looking over us. He provides us with an Air Force family that has shown an abundance of care for us during this time. He provided a close friend for me who knows both my joy of twins and my heartache from pregnancy loss. In all this grief and pain, He provided and still provides and understands what I’m going through.
And now I’m learning. I’m learning more about God and my faith. I’m learning about how many women like myself have had to suffer losing one or more children. I’m learning how to be extremely forgiving of unknowingly insensitive comments and remarks. I’m learning how to move forward, but that I will never really move on. The pain will eventually fade, but it will never be gone.
Losing a child, or children in my case, is something I do not wish for anyone. If you’re reading this and have never felt that pain, I truly pray you never have to. It’s a special kind of sorrow. You don’t lose a baby (or babies) once, but over and over again. Every moment, milestone, birthday celebration, and Christmas.
I was able to hold Larson and Emmett. To see their sweet faces and know they would have looked a lot like their older brother. To feel them move and dance within my body and have an idea of how their personalities might have been. I had 18.5 wonderful weeks with those two boys, and that’s more than others have gotten.
I ask you going forward to think before you speak.
Don’t minimize anyone’s pregnancy or infant loss. EVER. (If you need examples, I’m sure Molly and I both have too many to count.) Don’t ask questions or make statements about a woman reproducing. That is really nobody’s business but hers and her partners.
You could be asking someone like me.
Someone who has tried and lost.
lost halfway through,
lost when their adventure of motherhood was changing from pregnancy to child-rearing.
Or what if you ask someone who has been trying for years and has yet to produce a life? Imagine the pain you put every one of us through asking these questions or making these statements.
You are reminding us of the things we so desperately want to be different.
Think about pictures showing a family of 3 that in reality is a family of 5.
I hope that sharing my story has opened your eyes, and your heart, to what pregnancy and infant loss looks like. October was infant and pregnancy loss awareness month. Loss may be brought to public attention one day or month a year, but it’s now a part of me every second of every day. I’m living a life I never thought I would be, but I’m living-and I want to live for my sons. All three of them.
Will we have more children? That’s our decision. If we do, they won’t be taking the place of the ones we lost. Whatever happens in our future, I have the reassurance that God will provide, just like He’s providing a place for all the babies gone too soon.
I can’t wait to see you again, Larson and Emmett.
Virginia Dow is a natural light photographer in Shreveport, Louisiana.
To learn more about Twin to Twin Transfusion Syndrome, visit The TTTS Foundation here.