Zachary and Nicholas' Story

The Smith's Family: Zachary Raymond Dane & Nicholas Dane Raymond

After a 4 year long road of testing, treatments and surgery, my husband and I were informed that it was unlikely we would get pregnant on our own due to endometriosis. We were devastated by the news. At the same time we were told that we were perfect candidates for IVF. After much thought and deliberation we chose to risk everything to have a family. We sold our house and were able to start the IVF process in July 2004.

The following month we had our first blood test and were ecstatic to find out that the procedure had worked and we were pregnant! I had an ultrasound done at 6.5 weeks to verify a viable pregnancy. We were hoping for twins but we were just so happy to be pregnant. The ultrasound showed only one gestational sac…with two tiny peanuts in that single sac and each one had its very own heartbeat. We were having identical twins! We were beside ourselves and so were our families and friends.

At 16.5 weeks I went in to find out the sex of our babies. Since everything seemed to be progressing normally and my husband had already taken so many days off of work, he opted to not attend this appointment. A dear friend came along in his place and together we watched the babies move all over the place via ultrasound. Not only did we find out we were pregnant with boys but were given the bleak diagnosis of TTTS.

My doctor went on to explain that it was a disease of the placenta that caused one twin to donate blood to the other. She told us that one of her colleagues was part of a nation wide study to determine the best types of treatment for this very life threatening disease. However, she was already very concerned about the progress of our case and was afraid to wait for her colleague’s return. She advised me to have an amnio reduction right away. I was stunned and of course unable to make a decision of such great magnitude without my husband. The doctor gave me an information packet from the study, feeling it would help me explain the situation to my husband and give us enough information to make an informed decision.

She had me make an appointment for the following day for an amnio reduction in case we decided to go this route. Even after reading through the information with my husband we were in shock and reeling from the decision we were going to have to make. Uncertain what we should do but terrified to do nothing we returned the following morning for our first amnio reduction where they removed 1300 ounces of fluid. We were sent home with a follow up appointment set with the other perinatologist in just a couple of days, during which time we read through the information packet numerous times, looked up very bleak information on the web, and tried to not let panic take over our once blissful pregnancy.

We returned to meet with the “one” perinatologist who happened to be studying TTTS and discussed our very limited options. The doctor again did another ultrasound and then went over the diagnosis and the two major treatments for TTTS, serial amnio reductions or laser coagulation placental surgery. She went on to explain the research study that was basically set up to determine a set of characteristics or protocols to establish which out of the two treatments might be better in different circumstances. We had called our insurance to determine if this type of surgery might be covered. They were not very informative or helpful and did not leave us with a lot of hope that something like this might be covered.

Josh and I both felt it was very important to collect as much data as possible about this disease and how to treat it. Plus we felt this data might help someone else in the future, so after a lot of debate we decided to become participants in the study. We were randomly selected to have serial amnio reductions. We had four more amnio reductions each averaging about 1000 fluid ounces. At 20 weeks both our boys were in heart failure and the study’s guidelines mandated if the amnio reductions were not working then we were to have the laser surgery. We were immediately told we were going to San Francisco for the laser coagulation placental surgery. They put us on a plane that evening and had hotel reservations for us when we arrived.

We had, at that point, decided that baby A would be Zachary Raymond and baby B would be Nicholas Dane. The following morning we underwent a series of tests and measurements at the hospital. Everyone was so reassuring and empathetic but our test results were bleak. Not only were both boys in very bad shape but there were other complications. My placenta was anterior instead of posterior, and Nicholas’s umbilical cord was located on the very edge of my placenta. They were fairly certain they were not going to be able to save both babies. They gave us five very horrible choices: to do nothing, to terminate the pregnancy, to cut me open from sternum to pelvis, flip my uterus out and do the laser coagulation that way, do a radio frequency ablation on one of the two cords or potentially we could wait for my uterus to fill back up with amniotic fluid and they could try to do the laser coagulation from the side. I had received an amnio reduction just before leaving for San Francisco so the amniotic fluid was low. We left the hospital horrified and dejected – our hope had been ripped from us. Doing nothing or terminating the pregnancy were not options for us. I did not believe in my heart of hearts that my boys in the shape they were in could survive a sternum to pelvis flip over surgery so this was not an option. After hours of tears and agony we chose to wait for the amniotic fluid to build back up and try the laser surgery. It was my hope that this would somehow still miraculously save both my babies. However, when we arrived the following morning at the hospital we were given more bad news. Our boys’ condition was getting worse by the minute. We would not have time to wait. Both babies would die before there would be enough fluid; we would have to do the radio frequency ablation, a procedure that cauterizes the vessels in the umbilical cord of one baby. They would do this on Nicholas since he was developmentally so far behind his brother. He was also unlikely to survive due to his umbilical cord placement and because his heart problems were so much more involved. Needless to say, we were devastated!!

The procedure went as well as could be expected. Zachary’s heart and blood flow wasn’t affected during the procedure and the following morning he was already starting to show dramatic improvements. My heart almost broke when I watched him on the ultra sound trying to get his brother to interact with him. I had to be positive for the child still fighting for his life. We returned home with hope and sorrow.

At 36 weeks, the boys arrived on March 30th, 2005 and it was the most bittersweet moment of our lives; to have one baby so small and fragile, still fighting for his life and the other, barely a handful, who will always be a part of our lives even though we would not get to watch him grow up. We wanted each of the boys to have something of their brother’s so we gave them each others middle name by naming them Zachary Raymond Dane and Nicholas Dane Raymond. I held Zachary for all of one minute before he was whisked away to be transported to Children’s hospital where he spent his first 3.5 weeks. Where he underwent two cardiac catheter procedures in hopes of ballooning open his pulmonary valve. They finally sent him home on oxygen. Unfortunately, just five short weeks later he was not improving the way the doctors had hoped and he had open heart surgery at eight weeks old to remove his pulmonary valve.

We held Nicholas after he was born and we both sobbed. We sobbed for our loss and for Zachary’s loss. We wouldn’t get to watch him change and grow and Zachary would never get to hold his hand or snuggle up with him at night. Nicholas was so small and so perfect – just like his brother. We took a couple of pictures of him all wrapped up in his tiny blanket. These are the only pictures we will ever have of him. Nicholas was cremated and we spread his ashes in the place we exchanged our wedding vows. Every year we will light a candle in honor of the son we won’t get to see however he will always be part of our lives.

In July of 2005 I began to do more research on TTTS, that’s when I found a reference to the TTTS Race for Hope. I immediately contacted Lonnie to find out if they were doing the race again this year in Denver. I was elated to discover not only were they doing the race again but they would also like some help. I felt it was a great way to celebrate all that Zachary had been through and to honor my little angel Nicholas. I helped put together a few minor things before the race and was amazed by the feelings of joy I felt helping during the race. It was a wonderful yet difficult day in November because it was very hard seeing all those identical twins. I loved being part of something so important however it nearly broke my heart as well. I went home after the race and cried. I had spent so much time trying to get Zachary here and get him well that I really hadn’t taken the time to truly mourn our loss. I actually started that process after the race.

Zachary is now 17 months old and doing great. You would never know just looking at him that he had ever had to fight so hard to be with us. He is all boy and moving from the moment he wakes until his little head hits the pillow. His doctors couldn’t be happier. Sometimes when I look at Zachary I wonder what it would be like to have both our boys in our everyday lives. I truly believe we did what we thought was best for us and our sons. We had numerous families and total strangers praying for us. Although some things are still a struggle we love Nicholas as much as we love Zachary. Zachary will know all about his very amazing struggle and how miraculous he is. He will know all about his little twin. I continue to celebrate and honor both my boys by actively participating in the Fetal Hope Foundation which I fully believe has and will give hope to tons of other families. I am honored to help put together the Denver TTTS Race for Hope because I know it is providing hope to other families out there and creating awareness. Knowledge is power and we have the power to save these tiny lives.

Tammy and her family have risen above the pain to contribute in the most positive way to the efforts of the Fetal Hope Foundation and the TTTS Race for Hope.