Alyson & Alyssa

I am a mother of identical twin girls, Alyson and Alyssa. Sadly, I will only have the hope of having one of my daughters ever smile at me, hold my hand, or sing along with me to her favorite songs. You see, Alyssa, is no longer with us due to severe complications from a rare, but deadly disorder of the placenta called TTTS (Twin-to-Twin Transfusion Syndrome). I know I do not stand alone, but am aware that the group I stand with is small as only 2% of twin pregnancies are affected by this rare syndrome. I was very fortunate in my situation to have an excellent and supporting circle of friends and family as well as the countless strangers who prayed for me, my husband, and our girls.

My story is a rather lengthy one full of rarities and severe outcomes, which my husband and I fully believe are the results of TTTS. My complications began very early on in my twin pregnancy. Two days before Christmas I discovered I was pregnant with our first child. I can not describe the enthusiasm I felt as I shared our wonderful news with my husband and family as this was the best Christmas present I could give them. As I began my pregnancy I did what most new moms to be do. I went out to the local library and checked out almost every book I could find on pregnancy. Six weeks into my pregnancy, I had my first ultrasound due to pain I was experiencing on my left side. Doctors detected a small, but growing cyst on one of my ovaries. No heartbeat of the baby could be detected, but the baby’s sac was present. At seven weeks, my doctor performed another ultrasound to check the baby’s condition. To our surprise and elation there were two tiny hearts beating inside my growing abdomen. That very day, we were told something terrible had happened and that the girls may be conjoined twins. At 9 weeks, I saw a specialist, who confirmed something was wrong, but conjoined twinning was not the problem. Instead, he believed I had a condition known as monoamniotic twins. That is, the babies share one amniotic and one chorionic sac (many babies die because of umbilical cord strangulation).

By 18 weeks, both babies were growing. However Alyssa was two weeks behind in growth and appeared ‘stuck’ between Alyson and the wall of my uterus – a condition known as stuck twin syndrome. Also by this point, two cysts had developed and were continuing to grow on both of my ovaries, almost to the size of grapefruits. Once the stuck twin phenomenon was detected we began to speculate that indeed there was a dividing membrane between the babies. During my 19th week, I was diagnosed with TTTS and ordered to bed rest on my left side for the remainder of my pregnancy. The specialist I saw was excellent in informing me about the outcomes of this disorder. He gently stated that the chance of both girls surviving was 0-20%, due to the earliness of the transfusion which caused discordant growth between the babies. This left my husband and I feeling devastated as we desperately searched for answers and ways that we could try to save both of our girls. Two days later, we met with our doctor who gave us our options to increase the odds of the twins surviving. One of our choices was to clamp the cord of our smaller twin daughter, Alyssa, which would end her precious life and stop the transfusions. Another was to proceed with an amnioreduction treatment. A third option was to have an experimental procedure called the FLOCK where doctors go into the uterus and cauterize the common blood vessels in the placenta shared by both babies in an attempt to put an end to the TTTS. Our doctor added that the FLOCK procedure had never been done on a woman with an anterior placenta which would require the surgeon to cut a large incision vertically down my abdomen, extract the uterus, and suspend it while the doctors went underneath to perform the procedure. This left me feeling scared and even more devastated until the TTTS Foundation called which helped ease some of the confusion and frustration I was experiencing. Less than 24 hours later, my husband and I boarded a plane to Wisconsin, and placed the future of our twin girls into God’s hands and that of the surgeon’s. We were frightened not knowing if the flight back home would be shared with our daughters still safe in the womb. This was our only hope to stop the abnormal placenta from harming our twins.

Upon arriving in Wisconsin, we met with the doctor who educated us further about the procedure and expressed deep concern over my large ovarian cysts. He explained that if the cysts were cancerous, a hysterectomy would be encouraged. One thing was certain, we flew all that way to save our babies’ lives, not end them. The next day, after getting prepared for surgery, I went in for one final ultrasound so the team of surgeons could plan the details of my surgery. During the ultrasound, the doctors realized that the placement of the umbilical cords were too close to cauterize the vessels between them. However, we discovered that the twins were not monoamniotic and in fact each had her own sac. A new problem was presented to us at that point when we learned that Alyson suffered from severe polyhydramnios (too much fluid) and Alyssa suffered from the opposite, oligohydramnios. Our only hope and option at this point was to return home to our doctor who immediately began amnioreductions where he removed a liter of fluid out of Alyson’s sac. This procedure was done to hopefully allow Alyssa some space and to relieve both girls of the stress the added fluid was causing them. Four procedures past, mild contractions began, and four weeks later, the doctor placed me on indomethacin (an anti-prostaglandin to help Alyson’s urine output decrease and to also try and help reduce the swelling in my belly which would alleviate some of the stress it was placing on Alyssa.

After four days of being on medication, I felt great and went to the doctor’s office for only the second time without my husband (he had gone with me every visit 2-3 times a week) as I was feeling confident that things had to be improving. That day, on May 5, 23 weeks into my pregnancy, my world around me began to crumble even more as the doctor sympathetically announced the death of our precious Alyssa Marie. I was numb as I listened to every word and detail of my continuing pregnancy with Alyson and how congestive heart failure had taken Alyssa’s life. My doctor told us of complications that could arise now that Alyssa had passed. One complication was that blood clots could be passed to Alyson and me which could cause a potential threat to the two of us. That day, one final amnioreduction was performed as our dreams of two little identical girls laughing and playing together were put to rest.

The next week, we had hoped to finally get some good news but were told that Alyson’s brain was developing a condition known as ventriculomegaly and that it was a great possibility that blood clots from her sister Alyssa had passed and somehow had lodged somewhere in Alyson’s central nervous system. We also discovered that Alyson’s heart was going into tricuspid regurgitation (as a result of the indomethacin). We continued to gather more literature on the new problems and desperately grasp on to our faith. The next two weeks, my husband and I tried desperately to understand the events that had occurred to this point in our lives. We now had to learn to accept the great possibility of losing our remaining daughter and the fact that she may turn out to be severely disabled both mentally and physically from the onset of the TTTS if she did survive. By 25 weeks, I was placed in the hospital because of a funnelling cervix. By 26 weeks, the doctor discovered Alyson’s heart was experiencing tricuspid regurgitation once again. This time, a pediatric cardiologist evaluated the situation. The doctors debated whether they should deliver her now and take the chance of her lungs being mature enough to survive with the help of a ventilator, or to administer medication into the umbilical cord to try to reverse the effects of the tricuspid regurgitation. Neither decision was ideal as the medicine needed to help her heart problem was in England and had never been administered through the umbilical cord before in the United States. Also, Alyson was still very tiny, weighing a little over 2 pounds. In short, we all agreed that the injection of medication into the umbilical cord would be the best route to take and would be looked into further the following week.

As the next week approached, the doctors kept a close eye on the baby. Daily fetal nonstress tests were done as well as frequent ultrasounds. On June 8, 27 weeks into my pregnancy, things went from bad to worse for Alyson. Her heart rate had gone up very high and she was developing congestive heart failure. There was no question about it, Alyson Jean and Alyssa Marie would have to be delivered that day, less than two hours away. I can not fully express my feelings. I realized with great sadness that this would be my last day to hold Alyssa in my womb. I felt apprehensive about the outcome for Alyson. Would I hear her cry and would she breathe with or without help – would she simply survive? That afternoon, God was by our side as I am sure He was there all along as our little girls were delivered – one wiggling and crying while the other one entered motionless and quiet. Memories fill my head of my husband rushing to Alyson’s side to perform an emergency baptism, while tears filled the eyes of those in the room as Alyssa was silently delivered. I will never forget that warm afternoon in June as family members gathered in my hospital room to hold Alyssa and say their final goodbyes. This was closure for many and a moment we all will truly cherish.

Many other events took place from that day forward. I am ecstatic to announce that Alyson is now home with us after two and a half months in NICU. Our precious Alyson is perfect to us even though she has special needs as a result of the severe brain injury. I am happy to announce that she drinks from a bottle, eats from a spoon, laughs, giggles, and rolls over. All this from a little girl who we were told would only be a vegetable. As you can see, she is a miracle to us, our family, and loved ones.

I do not know what God has in store for our precious twins, but I do know that both girls have taught each one of us a lot about life and about our faith. Tears still fill our eyes as we proudly talk about our twin girls and the hopes that we had of having the two of them to watch grow and flourish together. We have hope that through all the negative that has occurred around our twin pregnancy that some good will come. It brings me both delight and sadness to know that I will always, eternally have twin girls. I will forever feel blessed that God chose me, his daughter, to witness the beauty of having two very special beings growing inside me. I look forward to the day that my little Alyson may ask me to tell her about her twin. I continue to pray that doctors will be proven wrong and that my precious daughter will one day walk, talk, and even hold onto her favorite teddy bear. I hope that those of you who read this will know you are not alone in your fears and grief as we all share our sorrows together.

Cindy
…Alyson is now almost 8. Cindy is also the mother of two subsequent children.