Diagnosis: Twin-to-twin transfusion syndrome (TTTS)
By A Bereaved Mother of Twin Boys
My story began at the end of May 2003 when we discovered with sheer joy that we were expecting our third child. Little did we know just how rough the next few months would be. I became very ill with severe morning sickness as I did with my past two pregnancies. It became extremely dehydrated, requiring hospitalization on three different occasions.
Upon being released from my third hospital stay, my OB-GYN ordered a home healthcare service to assist me. I was on an IV drip and had a pump in my leg administering Zofran (A medication used to help with nausea and vomiting). I had weekly checkups with a nurse and had daily phone monitoring from the service. This was a very rough experience to go through especially having two children at home that needed to be cared for. Thank goodness for the help of my family during this time, without them I don’t know how we would have made it through.
During the second hospital stay to treat me for the morning sickness, a routine ultrasound was done. It was then, at 11 weeks pregnant, that I found out we were having twins! You can imagine my surprise, my elation, and my fears. This was a completely natural occurring twin pregnancy. I was in awe of this miracle, but at the same time, afraid knowing of all the complications that can occur in a multiple pregnancy.
The prospect of having four children was also daunting to me now. My husband was ecstatic that we were having twins and told me not to worry. He said he would help me, hire a nanny if he had to. The rest of our families were thrilled as well to find out. They offered their support with anything we needed during the pregnancy and after the twins’ arrival. My nervousness about the pregnancy began to fade knowing we had such a great support system. I soon became enthralled with the fact I was carrying twins. I knew this was a great honor and that God had chosen me to be their mother.
My sickness finally subsided around 16 weeks. I felt a burst of energy during this time, so thankful that I was feeling better. I started buying maternity clothes, thinking of baby names, everything seemed to be falling into place. I had an appointment with my perinatalogist also at 16 weeks for an ultrasound; this is when my world began to crumble.
It was so cruel because I had been so excited, as this was the time I was supposed to find out the sex of the babies. This became insignificant now compared to what the doctor was about to tell me. He told me that Baby B was smaller than Baby A and that it had little amniotic fluid surrounding it. I knew subconsciously what this was a sign of, having just read about it in a book about twin pregnancies.
My fear became a reality when he told me he thought the baby was suffering from Twin-to-Twin Transfusion Syndrome. This is disease of the placenta afflicting perfectly normal babies. It is an uneven exchange of blood flow and oxygen from one baby to the other. It causes the smaller baby to become deprived of the blood flow/oxygen and the bigger baby to have double the blood flow/oxygen, causing a strain on the baby’s heart. Left untreated, the mortality rate is 80-100%. Knowing this, I was engulfed in panic. The doctor then told me to wait two more weeks to see if there were any changes and at that time they would be better able to assess the situation. The two weeks of waiting were agonizing and seemed to last an eternity.
At our next appointment we were told that Baby B was still not growing at a normal rate and the amniotic fluid level was still low. The baby now developed fluid on the brain. The technical term for this is ventriculomegaly. The news was devastating to us and I became inconsolable in the doctor’s office.
They now recommended that we consult with a specialist in Tampa that dealt exclusively with Twin-to-Twin Transfusion Syndrome. We were told that he performs a laser procedure to seal off the abnormal connection of vessels in the placenta. They cautioned us that this was a relatively new procedure, risky and experimental at best. We scheduled an appointment for the very next day. After an extensive level 2 ultrasound, he told us that it didn’t look like Twin-to-Twin to him, but suggested that it may be a genetic syndrome.
To make a long story short, the next few weeks were preceded with a series of tests. We had an AFP test, and two amniocentesis. We waited anxiously for the results and seemed to just shuffle back and forth from our many doctor appointments. That time now seems like such a blur to us. We were so confused, so worried about the uncertainty of this pregnancy. It didn’t help matters that my perinatalogist and the specialist in Tampa could not agree upon what the problem was.
My perinatalogist still thought it was Twin-to-Twin, the world-renowned specialist of this disagreed, suggesting a syndrome. After all of this and never receiving any promising news, we opted to end our pregnancy at 21 weeks. The tragedy of my story is that we had one healthy baby by all accounts and one very sick baby, but nothing could be done to save the healthy baby without posing a great risk to him.
I just couldn’t believe that in today’s world of technology and medical advances that nothing could be done safely. Trust me, we tried to look into cord ligation (a procedure in which the sick baby is let go in order to save the other baby) but the circumstances of our pregnancy prevented us from doing this option safely. To add insult to injury, the amniocentesis we had done on Baby B’s sac (which was unsuccessful due to the lack of fluid) seemed to have caused a rupture of the separating membrane between the two babies. This now meant that even if we were a candidate for the cord ligation surgery, it would now become riskier and pose more complications to the baby we were trying to save.
The actual termination procedure seemed to be surreal. I knew what was happening that day, but tried somehow to separate myself from the events that unfolded. I felt like I was outside looking in, not believing that it had come down to this. We had to travel to a different city because the only option offered locally at 21 weeks was by method of induction. I could not bear the thought of going through the motions of labor, delivering my twins, seeing their precious faces, and not being able to take them home. I chose to have a D&E.
I’m sure people will have their opinions about which method is more humane. But for me, it’s horrific either way and the outcome is ultimately the same. It is a loss of life that held so much promise and possibility, gone in an instant. Life taken so unnaturally from me, leaving me with so much unspeakable pain. I grieve tremendously for the baby that was sick, but feel at peace knowing that his suffering has ended. I grieve tremendously for the baby that was healthy and haunted by the fact that I had to end his life because the doctors could not save his.
I don’t regret my decision, only that I had to make it. I am grateful that I’ve already been blessed with two healthy children. They are the glue that keeps me together during these dark days. They keep me busy and keep me from constantly thinking about this nightmare. I am thankful to have found this support group and feel comfort in knowing that, unfortunately, I’m not the only one to have gone through this most tragic experience. I am very sorry for the pain you parents have endured and hope the future will only bring good things to you.
And lastly, to my Twin Boys, I am saddened that I never had a chance to see you, to touch you, to hold you. I dream of what would have been and will ache for you both until my dying day. Only then, will be become reunited again. Until then, may God wrap you in his arms and keep you warm until my arms can finally hold you. Take care of each other. I love you with all of my heart and soul. I hope you can understand what I did and how I never wanted it to be this way.