Faces of Loss, Faces of Hope

Susan

Mom to identical twin boys

Born and died May 31st, 2009 at 22 weeks 5 days

Marlborough, Massachusetts

My husband Matthew and I grew up a town away from each other. In fact, we were high school rivals. He was an identical twin, so I always heard about the twins or Matt & John the twins....being at the age of 14, 15 everyone had crushes on the twins.

I dated one of their lacrosse teammates when I was 15. We were watching a movie at his house, when he got the call that there was a really bad car accident and his teammate died. His teammate was Matt's identical twin brother, John. There was no drugs or alcohol involved, it was just a windy road and it had rained and the car went off the road. It devasted the whole community and especially Matt. I mean, you grow up a twin having someone look just like you and that's how everyone identified you as one of the twins. Matt always blamed himself saying it should have been him because he was the bad twin, the trouble maker. I went off to college, but I always remembered that night. Even though I hadn't met John, he was the first person I remember dying outside of family and died tragically. 

I went off to college and came home on spring break and ran into Matt. This was 5 years after the accident and he had been through alot. He turned to alcohol and abused that from probably the age of 17-20. He had been sober and was working on getting help. But there was always a part of him that was missing. You and I could lose our parents or our siblings, but imagine losing your identical tiwn and having to wake up every morning and see a reflection of him in the mirror. Imagine knowing all your dreams of college and life after college are now gone and its just you by yourself. 

It has been a long hard road since I met him. He never went back to abuse alcohol, but every birthday, every holiday, even the anniversary of his brothers death is hard....you have that one thing that's always missing, and that is his identical brother, John. 

It took us 9 years to get married. He had always planned a double wedding with his twin, so it was a really big decision for him to propose. I never pressured him or really ever thought we would get married, only because I knew it would be the best day for him but also the worst. We wrote our own vows and included the memory of his brother. He cried all morning before the wedding, and cried at the altar. It was emotional and there was not a dry eye during the ceremony. 

We knew we wanted children and figured after we got married, I'd go off birth control and if it happened it happened. I got off the pill in July and was pregnant by February. Since identical twins are somewhat of a "fluke" I don't think we ever considered it a possibility. Fraternal twins are genetic because it has to do with the release of 2 eggs, but identicals are somewhat of a mystery still where for whatever reason within 4 days after conception, the one egg and the one sperm split. So we were excited to get our first ultrasound at 6 weeks, not knowing what we'd even see Matt was talking to the tech while I was getting changed and he was saying jokingly, I better only see one in there, I was a twin and lost my identical brother. Well, sure enough, they start the ultrasound and the first words out of her mouth was well, look at that! You are having twins and I am 99% sure they are identical. Well, that was enough to have the both of us break down and start crying. I mean, what are the odds??!! So we called his parents right when we got out of the appointment and his dad nearly drove off the road and his mother cried.  It had been 16 years since his identical twin brothers death who was 16 when he died and I was due on the 16th.....

At this point we felt like we were blessed. Really truly blessed. I don't know if I believe in miracles, but this sure felt like one. i felt like someone was trying to wrong a right in Matt's life for taking his brother away too soon. I mean, I'm talking like Lifetime movie or Oprah stuff....serious. We instantly fell head over heels for those 2 little babies that weren't more than a size of a blueberry. From there, we were sent into a whirlwind of appointments and specialists and tests etc. I didn't have any health issues, I've been real healthy all my life. We went and saw the perinatoligist at 12 weeks and she explained all about mono/di and di/di twins and everything! She had gone to Harvard Medical and worked in Boston at one of the best hospitals. She came to our hospital 2 days a week as sort of a partnership between the hospitals. So everything looked great at our ultrasound, we scheduled a bunch more appointments and she mentioned TTTS (Twin to Twin Transfusion Syndrome). She told us that it was pretty rare and only occured in about 10-15% of pregnancies. She said that's why I would come in every other week for ultrasounds and more frequently after I hit 20 weeks to make sure everything was progressing well. We went in at 18 weeks, and found out they were boys. I felt like Matt was going to be able to re-live out his twinhood through his own twins. I mean, it couldn't have been a more perfect ending to such a difficult time from the car accident up to now. 

All my blood work, all my tests, everything was perfect. I was in my 2nd trimester, feeling great, getting my energy back, and more importantly planning our future with these 2 sweet baby boys. We went on Tuesday, May 26 for our 22 week ultrasound. Amazing how they had grown and how they had personalities of their own. All was good, my fluid was good, their weights were good and there was not one thing to be concerned about. In fact, my doctor said it was picture perfect. So we went home and continued on.

4 days later Saturday night, we went to bed early, Matt had a fishing tournament the next day and needed to be up by 4am. Well, around 1 am, I woke up feeling like I had to pee, which I always did. When I got up, I noticed a dull pain in my back, just thinking I was getting bigger so thought nothing of it. Well, for the rest of the night, I kept having these urges to pee every 10-15 minutes. Of course, my bladder was empty so I never really had to pee, just felt like I did. I sat up in the living room from about 1am to 4am. I just couldn't get comfortable in bed, so I thought if I sat in the recliner maybe I could rest that way. But nothing worked and I kept feeling like I wanted to pee. Matt was up by now, and I told him that I thought I had a bladder infection and I'd call the doctor in the morning. I called my doctors office at 8am. It's a Sunday (May 31st) so nobody is there, but at least I can leave a message with the answering service to have someone call me back. Someone finally called me back around 10 and told me I could either go to the hospital to the Labor & delivery floor and have them check me out there or wait until Monday and see my normal OB. I figured if it was a bladder infection, I wanted to get on antibiotics or treated as soon as possible. 

I showed up at the hospital around 10:30 or 10:45. I explained to them that I had back pain and lower abdominal pain with the feeling like I had to pee every 10-15 mintues. They hooked me up to a fetal heart monitor and left me there. I kept having to call for a nurse because I kept feeling like I had to pee. They did take a urine sample to test it.  So around noon, a nurse came back told me my urine was clear so no infection. Then she's asking me if I am having contractions. I sort of laugh at her, because why would I be having contractions?? And wouldn't I know if I was having contractions or not? I mean, I hadn't made it to birth class yet, but I'm thinking it would hurt like hell having a contraction. She dismissed it as well. The resident doctor came in, checked my cervix and told me that based on the fetal heart monitor strips it appeared that my uterus was irritated. Well, what does that mean? She said that because I am carrying multiples and I am growing that I'm just experiencing growing pains, which is why my back hurts and why I have lower abdominal pain. She said I can go home and take some Tylenol, and put heating pad on my back if I want. They let me go around 1pm that afternoon. So, I went home. I mean, I drove myself there and drove myself back. I hadn't told anyone because Matt's on his boat and can't answer his phone. So I get home, ate something, took 1 Tylenol, I propped myself up in bed and turned on the TV. I called my mom just to let her know and said I was going to try to get some sleep since I've been up all night. Well, I didn't get any sleep and I didn't get too much rest. I felt a little pop and then all this fluid started to gush out of me. I ran to the bathroom, phone in hand and called my mom. My mom lives about 40 mintues from me. She said call the doctor (duh!!!). So I called the answering service left them another message saying that I called earlier for a bladder infection, the hospital sent me home, and now I think my water broke? They said go back to the hospital. So here I am scared to sit, carrying a towel around, waiting for my parents.  I had left a message on Matt's voicemail, but I'm still thinking there is a positive outcome and things are going to be fine, but maybe I will just have to go on bedrest now. Matt should be home by 4 or 4:30 which was about an hour. 

I get to the hospital and I walked in that room in the hospital and you could see the looks on everyones faces.....they knew they messed up and shouldn't have let me go that morning. Everything I was experiencing in the morning was BACK LABOR, and I was in labor when they saw me in the morning and they missed it. Well, thanks for telling me now.....now that my waters broke.  It was all the same doctors and all they could do was apologize over and over. They couldn't understand how I had such a perfect ultrasound 4 days prior, and now I was in the delivery room. Still not knowing what was going on, I guess I was in shock or denial? They immediately hooked me up to an ultrasound and there were my babies, with plenty of fluid around them both and both their little hearts beating strong. They doctors said they were going to call the Boston hospital, where my specialist was, to see their recommendations. I'm thinking I'm going to have a ambulance ride to Boston (which is about 45 mintues away) and they will plug me up or give me some medicine to stop contractions....something, anything.  I can't lose these babies!  Matt enters the room and I breakdown and start apologizing. Not even sure why I am apologizing, I just didn't want him to see us like that. And it happens to be the same hospital his brother died in. 

It's about 4:30 now. I'm on IVs and fetal heart monitor. Still uncomfortable, but not unbearable. The doctors come back in and tell me they got off the phone with the Boston hospital and the doctors there say that since my water broke, there isn't a whole lot they can do right now. I wanted to puke when I heard that but instead I start sobbing and crying saying that I can't lose these babies....I can't lose them. I try to gain composure and they said that the best we can do right now is to wait and see what happens. I will be on bedrest and we will try to make it to 24 weeks. Even if they are able to hold off the labor 2 weeks, there is a great chance they will have lifelong health issues and there is still no guarantee they will survive since their lungs aren't fully developed. Again, I start uncontrolablly sobbing, to the point where i just want to throw up. I try to calm myself down, because this seriously can't be happening. I delivered one at 7:00 and the other one at 7:30. The first twin weighed about 14oz and the second twin was about 18 oz. The first twin was very pale and the second twin looked red and purple in color. The delievering doctor said that the difference in color and the difference in weight was an indicator of twin to twin. I still didn't beleive it since I had a perfect ultrasounds, and I guess I was led to believe there would be signs in the ultrasounds, like difference in fluid volume, and differences in weights. My ultrasounds were never like that. 

Instead of a burial, we opted for autopsies so we could confirm twin to twin, and the hospital would take care of the remains. Giving birth is supposed to be the happiest day in a persons life. Instead of being asked what you are going to name your first born sons, I am being asked how I want to bury my first born sons. All my bloodwork had come back normal and there was no sign of infection. 8 weeks later, no answers and no autopsies. The hospital messed up and never performed the autopsies as we requested. It feels like I have been robbed yet again. That hospital did so many things wrong, from the moment they dismissed me in the morning and dismissed my signs of preterm labor.  I'm not saying the outcome would have been any different. Even if they had been able to slow labor in the morning, for how long? A day? A week?? 2 weeks?? I was 22 weeks and we would have to have gone 10 more weeks, and I don't know if that would have been possible, but i guess I will never know. I don't have a say and I don't have answers.  No answer will ever be good enough....I was supposed to have those twins. This wasn't supposed to happen to me.  My perinatologist was the only one to help us get some sort of answers. By not doing the autopsies, we couldn't say definitively it was TTTS. Which, left me feeling like I failed and my body had failed. The one thing the hospital did have was the placenta pathology and the placenta slides. My perinatlogist took that to her hospital in Boston where they analyzed it and could conclusively say based on the placenta pathology and the pictures of the twins at birth and their presentation, that it was TTTS.

Losing the twins opened up so many wounds, so many past wounds too from losing Matt's twin brother. We went through anger, and sadness, and just being miserable. You feel like all your hopes and dreams are taken from you and you have nothing to look forward too. And I still felt like I could feel them moving inside me still. I did start therapy in August 2009, and that did help. But again, I strongly felt like nobody could understand what I have been through or what I am going through unless you married a Twinless identical Twin, and your first pregnancy was identical twins. I guess through all of it, it just re-affirmed our desire to be parents. I knew as soon as the doctors said we could start trying, then we would.  I was so sick of watching everyone else who was pregnant the same time as me, have their babies, and I have nothing. Everyone was having babies but me.  I secretly hope for twins again. I know with any future pregnancy I will be  happy but not anywhere as ecstatic as I was the first time around. I'm scared about what will happen, will I make it 22 weeks, and what will happen at 22 weeks, what if it happens again?  What if I make it full term and something happens in the delivery room?  All I know is how bad it can be.....no one ever tells you the dark side of pregnancy.

It seemed like the weeks following their death, everything around us was twins.  Our neighbors across the street found out they were having fraternal twins, new neighbors down the street moved in with identical twin girls.  Every show on TV had to do with twins, the woman at the coffee shop who just started working had twin boys, the grocery store hired identical twin boys.  We just felt like it was constantly being thrown in our face.  

You can contact Susan at sue.payne@hotmail.com