Diagnosis: Conjoined Twins
My husband and I were in the process of moving back home closer to family when I found out I was pregnant. I surprised him on our two year anniversary with the pregnancy test hidden under his gift I was giving him. It seemed like perfect timing and that everything was just meant to be.
I had a fairly easy first trimester. I had nasuea daily and was very tired, but I never really thought it was that bad. Then at about 12 weeks I started feeling pretty good and had an official baby bump to show off. I saw my OB/GYN from the very beginning, did all the usual testing and everything came back clear. At each appointment we heard a strong and normal heartbeat. Finally, at 19 weeks he scheduled me for an ultrasound. My husband and I were so excited to find out what we were having. The day was February 2, 2011, a day I will never be able to forget.
Since it was February 2nd, and we live in western PA, Groundhog’s day also turns into career “shadow” day. So the ultrasound tech asked if I was okay to have a high school student in the room shadowing her. Since I agreed she told me that she would be talking more during the initial viewing than she normally would. The screen was turned away and she started by showing the girl the placenta and began to explain placenta previa. She was in mid-discussion when she stopped talking. She was silent for awhile reviewing the screen and then started talking again. My heart stopped for a brief moment but I wouldn’t let myself worry too much. Then, a few minutes later she asked to be excused for a minute and rushed out of the room. I again started to worry and then told myself there was nothing I could worry about at this point. When the tech returned she just said she had some stomach issues and continued the screening. Then she finished and said she was going to get my husband and would return.
When she returned with my husband another man followed her into the room. She introduced him as the radiologist. I still didn’t think anything of it because this was my first ultrasound. What came next shattered my world. He very bluntly told my husband and I that they found a complication, that we were pregnant with twins and they were conjoined. I immediately was in shock and started crying. I didn’t even know what to say. Luckily, my husband was more composed and was able to ask if they could tell where they were conjoined. They told us that they were conjoined at either the neck or chest, they weren’t certain. In fact it was the first case that they had ever seen at this hospital. In my head I pictured them conjoined but just by skin or a small section of their bodies, but then my husband asked if there were two bodies and she said “no, it appears they only have one set of legs.” After she cleaned me up I went into the bathroom and just sobbed. Upon returning I had composed myself enough to ask if she could show us the image and if they knew the gender. She showed us the images on the screen and told us that from the best they could tell they were girls.
At this point I still thought of it as my baby with a conjoined twin. The worst part was no one had any answers and we couldn’t see anyone who may have a answer until the following day. So we just had to go home and wait. It was awful walking out of the hospital feeling nothing but despair. When we arrived home we were greeted by family and messages wanting to know what we found the gender to be. I couldn’t even respond. My husband told his family and then I worked up the courage to call my mom. I was crying so hard, I accidentally hung up and she had to call me back. I just laid in bed crying, not wanting to be near anyone. Then my mother-in-law stopped in and came to talk to me and my dad stopped by on his way home and did the same. It was at that moment that I realized talking to others and having their love and support made me feel so much better. From that point on I never let myself lay and cry by myself.
The next day we went to my OB/GYN’s office and he saw us right away. He explained to us that it appeared that babies were conjoined at the chest, but we would need to go to a specialist to find out in better detail. The thing is there really isn’t a specialist for conjoined twins, because they are so rare. We were just sent to a more experienced OB/GYN that has seen a case or two before and was able to do a higher grade ultrasound. So we left and went straight to the specialist. They were extremely kind and took us back right away. The tech was considerate and let us watch the screen this time, but did not speak during her examination. Then she brought in the doctor who also examined the images and explained to us everything he was seeing. After the exam they met with us in a conference room to discuss the findings. He even drew a picture and spelled everything out for us. The twins were conjoined with one body from their toes up to their waist. From there the spines split off but they appeared to share the same chest. He explained to us that they had seperate stomachs but they shared a heart. There was no possibility of seperation or reduction of one twin. Their chance of survival was less than 5% with a lifetime of surgeries, doctors and hospitalizations if they did survive. And even if they did their life expectancy would be short. We then met with the genetics counselor who talked to us about our options, outreach and counseling. We also confirmed again that they were girls and asked to have pictures of the ultrasound. This was the point where we started to think of them as our girls, two babies, twins.
That ride home felt like the longest ride of our life. My husband, mother and I sat in silence for the 2 hour ride home. When we got home, my husband and I went straight to our room to talk. I started crying and explained to my husband that though it was the hardest decision I had ever had to face, I felt that we had to end the pregnancy. Going into the appointment we had a different outlook and wanted to do everything to save this baby or babies. But once we learned more it just didn’t seem like the best option. Then we also learned that we could actually induce labor, give birth to the babies, see them and even hold them. This made me feel better (or at least as good as I could) about the situation. My husband told me that he felt exactly the same way. So we went and talked to both of our families and let them know our decision, and we found them all to be 100% supportive.
Our girls were born on February 8, 2011. We named them Faith and Hope. We got to hold them and they were absolutely beautiful. They had conjoined arms behind them that one nurse said looked like angel wings. I’m so glad that we decided to see and hold them, it’s something I will always cherish. The greif nurse even took beautiful pictures of the girls for us to keep. We buried them two days later and had a private funeral service with our immediate families. I have to say that the care and compassion we got from the nursing staff was indescribable and we are forever grateful to all of them, including our doctor. They all were so sorry about the situation we were in and wanted to make it as easy of an experience as possible. I don’t think we would have come out of it like we did if it hadn’t been for all of them.
I can’t pretend that everything is okay and that I don’t have questions or that I’m even truly happy. However, I have this deep sense of being surrounded by my girls on a daily basis. It’s like they are pushing me to see the positive in every day. When we went into the hospital it was so cold and a huge snowstorm came through, but everyday since they were born the sun shone even on the coldest or grayest days. I know it won’t always be like this, but it’s just makes me feel like my girls are saying, “mommy, it’s going to be all right.”
I titled this “Losing and then finding Faith and Hope” because when we first found out I lost all hope and faith. But over the last few weeks I’ve found that the only thing getting me through this is Faith and Hope. I believe that we did what was best for the girls, as family and our minister has said, we were left with an impossible decision. I have faith that they were sent to be our angels and hope that we will have more children someday, and hopefully soon.
Some days I can go all day without crying and feel like I’m getting stronger, but then it will just hit me out of nowhere. Like last night we went bowling because our friends thought it would be good for us to get out. I wasn’t sure about it at first and then when we got to the parking lot I got extreme anxiety. But I went in and had fun, until there was this little girl bowling next to us. She was probably about 3 with her hair in a little braid. Everytime she threw the ball it went so slow it looked like it wasn’t even going to make it. It killed me for some reason, she wasn’t a baby but I just pictured my girls at the age and the life they never got to experience and wouldn’t have been able to no matter our decision. It hurt me so much and I cried uncontrollably the whole way home.
I just wish there was someone that actually understood my situation, someone who has been through the same thing. There is no support group for the loss of conjoined twins that I have been able to find, it’s such a rare occurence that there isn’t anything for us. Our hospital has a child loss support group though which we will be attending as soon as the meetings start. I have found that talking about it helps, when I ignore the pain and hurt it just builds up until I explode. I’m lucky to have a strong husband at my side who is always here for me and available to listen.
We know it’s not going to be easy, we know it’s going to be a long road, but we know we’ll get through it together. Lastly, I just want to say I love my girls more than anyone I have every loved before. In some ways I feel that my girls are special because they are in heaven in the Lord’s arms.
Faith and Hope’s Mommy, Lisa