One Heart Beat, Two Babies: A Story of Conjoined Twins

 

One Heart Beat

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.

boysheads

Photo Credit: Nancy Hellsten

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.

kissboys

Photo Credit: Nancy Hellsten

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.”

 She is my hero.

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33 Responses to One Heart Beat, Two Babies: A Story of Conjoined Twins

  1. Autumn Longmire
    Autumn Longmire July 14, 2016 at 6:58 am #

    Crystal I love this post.. Thank you for sharing your story. Your boys are so beautiful.

    • Crystal
      Crystal July 16, 2016 at 8:02 am #

      Thank you!!

  2. Meredith July 14, 2016 at 7:02 am #

    Thank you for sharing your amazing journey. Happy 8th Birthday to your sweet baby boys! I love that you got a few hours snuggling them! Thank you for opening your heart up to others.

    • Crystal
      Crystal July 14, 2016 at 1:26 pm #

      Thank you! Yes, I’m so grateful for the short time we did have with them.

  3. Brenda Earhart July 14, 2016 at 8:59 am #

    What a beautiful tribute to two of God’s most precious creations.

    • Crystal
      Crystal July 14, 2016 at 1:27 pm #

      Thank you! Thank you for always loving and supporting me, too, Aunt Brenda! I love you!

  4. Jenna Wilson
    Jenna Wilson July 14, 2016 at 9:16 am #

    You are a blessing my friend. What a beautiful story.

    • Crystal
      Crystal July 14, 2016 at 1:27 pm #

      Thank you! ?

  5. Jacqueline July 14, 2016 at 9:48 am #

    I’m so glad I read this. It is just beautiful. You are truly amazing cousin!!

    • Crystal
      Crystal July 14, 2016 at 1:28 pm #

      Thank you sweet Jacqueline! Love you!

  6. Jane July 14, 2016 at 10:07 am #

    Beautiful tribute to your boys and to all families that have had, are raising or are a conjoined twin. Something nobody thinks they will ever experience personally or see in their lifetime and something that changes lives forever when we do.

    • Crystal
      Crystal July 14, 2016 at 1:28 pm #

      Exactly Jane! Thank you!

  7. Grandpa Rosecrance July 14, 2016 at 11:47 am #

    Thanks so much Crystal. You’re great, as is your tribute to the boys. I have been thinking of them and you and Matt all week. Happy Birthday Joshua & Caleb. We love you!
    Grandpa

    • Crystal
      Crystal July 14, 2016 at 1:29 pm #

      Thank you, Brian! We love you!!

  8. DC3 July 14, 2016 at 2:43 pm #

    Thank you for sharing Joshua and Caleb’s story. What precious, beautiful boys. I’m deeply sorry for your loss. have identical twin boys as well.

    • Crystal
      Crystal July 16, 2016 at 8:09 am #

      Thank you! And thank you for reading!

  9. ruthfameree July 14, 2016 at 8:41 pm #

    An absolute beautiful story. Thank you so much for sharing.

    • Crystal
      Crystal July 16, 2016 at 8:09 am #

      Thank you, and thank you for reading my post!!!

  10. Micki Schmidt July 14, 2016 at 10:38 pm #

    Thank you for sharing. My daughter-in-law’s sister became pregnant. I’m a Nurse Practitioner and kind of the go-to person for health issues in the family. Of course all the congratulations went out when we heard she was pregnant. Then the time for the ultrasound, 2 babies, every one so excited. Wait a minute, there’s a problem. I had been a NICU nurse right out of nursing school in 1980 and was there only 3 years. She had so many questions, questions I couldn’t possibly answer. The wait for the neonatologist was FOREVER. Was there hope they could be separated, at first it was thought so. Ok, a little less stress. But then more tests, more radiology. Now, maybe one could be saved. How do you choose which precious baby would be given life and the other death? More stress. So many questions. I felt so helpless, I couldn’t help her. Again, another specialist, now no hope for the survival of even one as their little shared heart had 5 chambers. So, as brave as brave can be, she carried those babies as long as possible. They were delivered by C-section and placed on life support. Big brother and big sister, other family members and Mom and Dad got to meet those very precious little girls. Lots of pictures were taken and when everyone was ready, as ready as one could be for such a thing, they were disconnected and placed in Mom’s arms, with Dad at her side, and his big hand on their little backs, the girls passed through the Gates of Heaven into the arms of God. As I write this there are tears flowing. Those precious little girls were angelic. I never got to meet them, only through the pictures, but I can tell, a little piece of my heart went with them to heaven. You women are my heroes!!!!

    • Crystal
      Crystal July 16, 2016 at 8:11 am #

      Thank you so much, Micki. This story touched me. Thank you for sharing. It’s amazing how many people prayed for Us during our pregnancy. It’s also amazing how many lives our babies and all the others like them touched. It’s beautiful. Such a miracle and blessing to be a part of it all. God is so good!

  11. Lindsay Burchette July 14, 2016 at 10:41 pm #

    Your courage in sharing this is just tremendous. Thank you so much for your willingness to do so in your beautiful writing.

    • Crystal
      Crystal July 16, 2016 at 8:12 am #

      You’re so kind! It’s not courage, just that tugging from God to hopefully educate and maybe help someone else! Thank you!

  12. Sadia July 14, 2016 at 11:45 pm #

    Thank you, thank you for sharing your story. I cannot imagine the strength you have had to find within yourself, and I am so sorry for the loss of your sweet boys. I have identical twins myself, and one of them once told she wished sometimes that they were “stuck together twins”. I’ve thought about that often, and what it would have meant.

    Love to your whole family.

    • Crystal
      Crystal July 16, 2016 at 8:15 am #

      It’s not my own strength, but in my weakness He is strongest (2 Cor 12:9) Thank you for reading! How precious of your daughter to wish they were stuck together! I’m going to hold on to this story, it comforts me. I often wonder if my boys are still conjoined in heaven. Mostly I think yes, because God made them so perfectly and they really were so perfect that way. This gives me even more of a vision of that!

      • Sadia Rodriguez July 18, 2016 at 9:30 am #

        Your boys help us see what a true miracle identical twinhood is. All life is, of course, miraculous, but the miracle of one body becoming two is bigger somehow. I think about what it would have meant if my girls hadn’t split at 7 days. There’d be another little girl who looked just like them, who’d have many of their traits, but would be a different person, and would entirely lack all the richness the twin experience brings to our lives. As I’ve written elsewhere, the world gets two amazing young women instead of a single little girl that would have been both and neither, loved as much and less, with a personality we will never know, but likely smart and funny and short and creative and intense and a bookworm.

        Much love to you. If you’d ever like to share some aspect of your story as a forever twin mom, we’d love to have you at hdydi.com!

  13. Lyndsey Hulen
    Lyndsey Hulen July 15, 2016 at 11:02 pm #

    Crystal,
    I just got a chance to read your story this evening. Oh girl, thank you for truly sharing your heart. What a journey! As strong as your faith is, I’m sure there were times when you just wanted to cry out to God, “Why me?” “Why them?” We’ll never understand His plans this side of Heaven. I’m sure that it wasn’t easy to find the words to type and to go back through the memories of your pregnancy. Thanks again for opening up about your precious boys.

    • Crystal
      Crystal July 16, 2016 at 8:17 am #

      Oh yeah, I’ve asked several times “Why me and why them?” But God is big and can handle that! Thanks for your love and support girl!!!

  14. Nicola @ Twinmummyyummy July 16, 2016 at 2:00 am #

    Thank you for sharing your heartbreaking story. I have identical boys and I was reading what you said with great interest. The 2 hrs thing resonated with me. My heart goes out to you X

    • Crystal
      Crystal July 16, 2016 at 8:18 am #

      Sobering thought, huh? Crazy that it could have only been 2 hours, that still boggles my mind! I was angry about that for a while, but now I just find it amazing and part of my story. Thanks for reading!

  15. Rebecca Hubanks July 19, 2016 at 3:13 pm #

    What a tremendous and beautifully written tribute. Joshua and Caleb: handsome names for such handsome boys. Thank you for sharing.

    • Crystal
      Crystal July 20, 2016 at 10:30 am #

      Thank you for reading!! They were beautiful. We picked the names because Joshua and Caleb were godly men and the first two to enter the Promised Land.

  16. Tarrah October 1, 2016 at 8:04 pm #

    Beautiful article Crystal. I pray you continue your writings and sharing your story of your boys, faith, and every day life. Your life has many chapters, only 2 of which I know show your faith. Life is hard for many and sharing trails with others help grow faith in many. Hugs.

  17. Barbie Dyer January 3, 2017 at 9:17 pm #

    Crystal thank you for sharing your story. Your boys are beautiful. You are an amazing women that I am so blessed to know.

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