Because their 8th birthday is tomorrow, I thought I would take this opportunity to introduce you all to my twin boys, Joshua and Caleb. When Matt and I got married, we started trying for a child right away. We got pregnant within three months. The pregnancy was going fine and we were excited to have our big anatomy ultrasound at 20 weeks. We had heard the heartbeat a few times, and I kept asking my doctor if he was sure there weren’t twins in there, because I felt all kinds of limbs moving. He answered every time “No twins, no way. One heartbeat, one baby.”
Except when there is one heart beat and two babies, like in my case.
As the ultrasound began, the screen above me flickered. I saw two heads and then the screen went black. I assumed that the person before me had twins and the screen was just “catching up.” The tech made eye contact with me; I guess in hindsight she was checking to see if I had seen what she had seen. Matt had arrived a few minutes late and rushed into the room. He was telling our tech that we didn’t want to know the gender. She interrupted him and said with deep gravity in her voice, “That is fine, but something is very wrong and I need to tell you right now. It’s twins, and they are conjoined.”
I immediately let out a scream “WHAT?!” Deep sobs followed. Matt didn’t understand and was initially excited that we were having twins. I tried so hard to make him understand between my sobs that this was so bad. She left to get the doctor and said they would be right back.
She returned about 15 minutes later and said the doctor would not be coming in. This was not my regular doctor, who was on vacation, but he had been my doctor with my first pregnancy so I knew him well. I still do not understand why he never came in, and it still bothers me to this day. She took measurements, told us she thought there was only one heart but couldn’t be sure, and put us in an interior waiting room.
We prayed, whispered, and sobbed in the waiting room for three and half hours. By ourselves, mostly, except when another patient would come in to wait for something. Finally, another doctor came to get us. He had clearly been in surgery. He sat with us, held my hands, and said they had never seen conjoined twins in their practice. He was referring us to a high-risk doctor and he walked us down to that office. He knew we were in shock. He did answer some questions for us, but he really didn’t have any answers. My regular doctor’s nurse also paid us a quick visit. She hugged me and prayed with us.
I will never forget the kindness and compassion of those two people.
Our initial appointment that day had been at 9am. We left the hospital around 5:30 that evening, weary and exhausted. We had little information, but we knew we would be traveling to see doctors who had delivered conjoined twins before. There are really no experts in this field, but if you get a doctor that has seen more than five sets, they are the experts.
Conjoined twins occur 1 in every 200,000 live births (at the time of my pregnancy), most being lost to miscarriage. Of those that survive to birth, most die within hours.
To put these numbers into perspective: how many people do you know with spina bifida? Spina bifida occurs about 3 in every 10,000 births (CDC). Many doctors feel the cause of conjoined twins could be lack of folate in the diet, which is the cause of neural tube defects like spina bifida, but they really aren’t sure of the cause. I was on huge amounts of folic acid before this pregnancy. After genetic testing, I learned I had some disorders that caused me not to be able to break down and use folic acid, which is a synthetic form of folate that occurs naturally in our foods.
Conjoined twins are all identical. They occur when one fertilized egg splits into two, just like with identical twins, but it splits too late. So some things are already too far in the process to split correctly. Some conjoined twins are connected at the chest, like my boys. This is the most common type, called thoracopagus. Some are connected at the head, at the buttocks, facing each other, opposite each other, or side by side. Some share just skin, some share key organs. Only fraternal twins are hereditary, and identical or conjoined twins can occur in any pregnancy — we all have the same chances of having identical twins.
We traveled to CHOPS in Philadelphia where they had successfully separated several (20) sets of conjoined twins. After two days of MRIs, ultrasounds, blood work and other tests, they told us the boys shared a large heart and liver. They could not be separated. They also explained that the boys were only two hours late in separation. That was a hard pill to swallow. What was I doing the day my embryo decided to become two? Did I run my usual five miles that day? Did I take cough syrup not yet knowing I was pregnant? If they had only separated two hours earlier, we would have perfect twin boys.
They suggested we go to Kansas to terminate the pregnancy. At this point I was already 26 weeks, and an abortion would be risky. They also told us there was a chance the boys could live conjoined for up to a year after birth. With this knowledge, we knew we would do everything we could to carry them to term and give them a chance at life. The doctors were also concerned about delivering in Knoxville; they felt the hospitals were not equipped for such a high-risk delivery. This terrified us.
We later went to Children’s National in DC for another opinion. They did their own testing and came to the same conclusions about the boys. However, they felt delivering in Knoxville would be just fine, and actually better to be with our support system. I am so thankful we went to DC, even though we got the same news about the boys not being separable; we needed them to tell us we could deliver in Knoxville. We spent the next day being tourists in DC and enjoying that beautiful city and being together.
We had already finished our nursery at this point, and we spent lots of time in there praying for our boys. Our dream now was to just bring them home.
We had several meetings with the staff at East TN Children’s Hospital to plan for the birth. We had so many NICU nurses, neonatal doctors, respiratory therapists and others on a special team just for our boys and us. Each boy would have their own team for the birth. We made all of the big decisions with their help before the delivery. Deciding just how much intervention to sustain life we were comfortable with. I know now God was protecting us, because once we saw them, how perfect and beautiful they were, we would have wanted to do everything possible to save them. But God had other plans, and the boys only lived an hour and a half after birth. We made life-long friends with the NICU teams, and they were there for us just as much as the boys. I cannot thank them enough for their love and selflessness during my pregnancy and birth.
What I want every reader to take away from this post is that conjoined twins are people. Beautiful people. Many survive and are separated; some even live their entire lives conjoined. What used to be considered freak shows in a circus act, are actually phenomenal people. They love, marry, work, and live with disabilities and challenges every day.
When considering what to include in this post, I polled all of my friends in our close-knit family of conjoined twins. These are the people that knowledgeably guided us during our pregnancy and supported us after the birth, and even to this day. They all agreed we don’t want to be considered special or “martyrs.”
One precious woman who is now a wife, mother and a formerly conjoined twin herself, said some powerful words that I want to sink into everyone’s heart. “I always explain to people is that it isn’t just the birth of conjoined twins, or in some cases our separation, that ends our stories. Having a set of conjoined twins or being a conjoined twin is forever your life and isn’t just the sensational parts that media likes to highlight. It’s missing those babies that didn’t make it; it’s the continuing health decisions that have to be made for your children post birth, pre-separation and after. It’s living with the physical and emotional issues that come with congenital health issues on a daily basis. Our lives are not a snapshot of birth or separation of a set of conjoined twins; it’s the daily grind we all go through with very special circumstances mixed in.”