Finding Out

Originally posted: June 14th, 2012

So, we were to the point of getting serious about adding another child to our family when I got a positive pregnancy test at the beginning of March. Not shocking, but a surprise. The timing seemed right in line with our plans. We had a good first prenatal appointment with our CNM (certified nurse midwife.) She even got out the portable ultrasound to show us the heartbeat. She suggested we bring our kids (ages 5 and 2) to one of the upcoming appointments so she could see them. We decided to take them to the next appointment (which was at 13.5 weeks and on a Friday, 5/4/12.) It should have been pretty easy to find the heartbeat with the Doppler, but it was kinda degenerating into mass chaos with the kids in the exam room.  Our CNM went and got the ultrasound machine again and that’s when we noticed something truly surprising. We thought we could see two babies. She immediately scheduled us for an ultrasound at the imaging center. We had two hours until that appointment, so we took the kids to my parent’s house so my sister could watch them.

On the 45 minute car rides to and from my parent's house, we spent some time sitting in shocked silence and the rest talking about all the crazy changes having twins would bring. At one point Tyrel said, “What if they are conjoined?” We quickly dismissed the idea thinking such a condition had to be so rare it would be almost impossible for that to be the case. Well, we got into the room at the imaging center and saw clearly that there were two babies, but almost immediately the technician kindly asked us if we knew they were conjoined. We did not and were speechless. What would this mean for us? She continued finding organs and taking measurements while silent tears slipped from my eyes. I had already been overwhelmed by the idea of twins, this new information left me feeling numb. The babies looked like they were hugging each other. They looked perfect in every way until she focused on the heart. We could see that there was only one. Simple logic told us that this was not good.

We went back to the office to see our CNM. She had called a perinatologist to get information for us on what we were facing. The prognosis was grim. We were told that we had the option to terminate the pregnancy in the next two weeks and if we decided to continue I would have to deliver the babies by classical cesarean. We wouldn’t know the exact complications of the twins’ shared organs until a specialist could do an ultrasound, but it was very unlikely that they could survive. We set up an appointment to meet with the perinatologist for Monday.

Over the weekend we got priesthood blessings, prayed and fasted and had family do so too. I did what research I could, though there wasn’t a lot to be found that was helpful. Conjoined twins are rare and most stories that are reported are about ones that survive long enough to attempt separation. None of those stories were about twins who shared a heart. The statistics were anything but encouraging. We started to accept that the condition would be life-limiting. We didn’t know what could or would happen if we decided to continue the pregnancy, but how could we make the decision to terminate?

We met with the perinatologist armed with as many questions as we could come up with. He confirmed that the babies were thoraco-omphalopagus conjoined twins. This means that they are joined from the upper to lower chest. He told us that they shared a single heart and a single liver. Both systems would be too complex to separate. Everything else appeared to be separate. He told us that if we decided to continue the pregnancy we should expect that they would live a couple hours to maybe a couple days. He also told us that the babies were boys.

After he explained his diagnosis we started to discuss our options. We needed to know what continuing the pregnancy would entail from a medical perspective. What risks would I face besides the risks that go along with having a cesarean? Would I have to be put under anesthesia for a classical cesarean? Would I have to wait until I was out of surgery to hold the babies? Would doctors be morally obligated to perform certain life saving measures after they were born which weren’t likely to ultimately save their lives? We thought these things might limit our time with them while they lived.

He made it clear that a classical cesarean had more risks involved than a transverse cesarean and that it would affect any future pregnancies I would have (which I already knew.) Other than that, the risks I would face would be the same as if we were having healthy twins (i.e. elevated risk of stillbirth, preeclampsia, gestational diabetes, and preterm labor.) He assured us that we would be able to make most of the decisions concerning the babies’ care after birth and that comfort-care only was an option. He told us that we’d have to talk with the doctors who would actually care for us at the University of Utah hospital to know what the delivery would be like. We asked him what his experience had been like with couples who decided to continue their pregnancies to term. He indicated that they had positive experiences when they were prepared for the loss of their children. He also told us that only we could decide what decision we would be able to live with.

Obviously we were very concerned about making the decision that would be best for our family. We had lots of little flashes of inspiration that, at first, didn’t seem to mesh, but after this appointment they started to come together. We were able to understand the model of perinatal hospice and find that we would feel comfortable following that model. We felt like some of our previous experiences had prepared us for this one. Though we felt it would be a sacrifice to give up the possibility of any more natural births, we didn’t feel that my health was in serious jeopardy. We were worried about how our children would respond to the experience and how we would help them understand it, but we knew there was support available to guide us.

Through an outpouring of the spirit we were able to accept that God’s plan is for these boys’ lives on earth to be short, but at least we would get some time with them. It’s not that we don’t believe that God could perform a miracle. We know He can, but it’s not always His plan. The time we will probably have with these boys may be short and the memories we have of them may be few, but it is His plan for them to be a part of our family eternally. We decided to continue the pregnancy.

We really appreciated the compassionate manner in which this perinatologist consulted with us. He had told us that if we decided to continue the pregnancy we should meet with another perinatologist/geneticist at the University of Utah Hospital for a second opinion and to transfer our care there. A week later we met with this doctor for another ultrasound and consultation. Her view of the case was the same as the first perinatologist. She assured us that she and the hospital staff had plenty of experience with the perinatal hospice model and would be able to help us have the experience we desire.

We have also received support from a bereavement counselor and pediatric nurse who are a part of a program called Angel Watch. They have given us ideas on how to help our little ones understand the experience and will help us to develop a birth plan as the pregnancy progresses. We feel so fortunate to have support from the medical community.

We are also so grateful for our understanding of the Plan of Salvation and for the promises God made to us when we were sealed in the temple. The knowledge gives us comfort. Despite that comfort, we still mourn the loss of what we thought would be. There have been hard days and will be more to come. We rely on our faith, the Atonement, and support from family and friends to get us through those times.

Meanwhile, we embrace the opportunity we have to make as many memories with the babies as we can while they are still with us. We have decided to name them Leif and Erik. The names mean beloved descendant and eternal ruler. We have not yet decided all the things that we want to do as a family in the coming months, but we’ve already had these boys with us as we’ve witnessed two amazing solar phenomenon.

In some ways, you may wonder why we are sharing such a personal experience so openly. The truth is we really want and need to feel your support. Telling you after it’s all over won’t be as helpful as sharing now. We also know that others may have similar experiences in the future and may only seek our support if they know what we have gone through. Email is probably the best way to contact us, but feel free to call if you want (though those of you with kids know that any call over 5 minutes can quickly lead to chaos.) Please feel free to ask us questions, it is easiest for us to respond when you do. Also, please understand that if we do not get back to you right away...or ever, it’s not because you said the wrong thing and we really do appreciate your support.

For those of you who like information, I have pasted some links to things that have been helpful for us.

Basic info on conjoined twins:
http://www3.telus.net/tyee/multiples/4conjoined.html
http://www.umm.edu/conjoined_twins/facts.htm

Information on carrying a pregnancy to term despite a life-limiting diagnosis (all these sites have sections specifically for family and friends):
http://perinatalhospice.org/FAQs.html
http://www.angelbabiesinfo.com/
http://www.janelebak.com/ctt/index.html