What Are the Treatments: The TTTS Foundation

Our Precious Gifts In Life
Adrianna & Sophia Boardway
Born November 4, 2002

My stepmother Sue shared some feelings from her heart, during the baby shower we had after the twins’ birth. "Terri, you have been given a gift you waited for all your life. You now have the responsibility for not just one child, but two beautiful little girls. Psalm 127:3 says, ‘Behold, children are a heritage from the Lord. The fruit of the womb is a reward.’

God in his wisdom has also given you a beautiful and loyal husband to share in the joys, tribulations and pleasures of parenthood. The faith you two share has been richly rewarded. In addition, you have been blessed with many loved ones who gathered here today to celebrate and shower you with gifts. Tucked in between the sweet little outfits and soft fluffy blankets, we have added our love, prayers, and support." My heart was bursting with gratitude and love as I listened.

Our precious daughters, Adrianna Grace and Sophia Antoinette, were born on November 4, 2002, twelve weeks premature. They were fragile survivors of twin-to-twin transfusion syndrome (TTTS). Their journey into our lives represents passionate faith, hope, and unconditional love.

Kyle and I met in1997, became engaged two years later, and married September 2, 2000. We both wanted children in our life. Earlier that summer, I attended a service at our church with my friend Mimi, who sadly was battling breast cancer. We had an outstanding guest pastor who was touching us all with his message. At one point he asked everyone to stand, and he walked through the church praying for various people. He came toward Mimi and I, and stood directly in front of me. I thought, "You need to move over one more person. Mimi needs you because she has cancer," but he stayed. He placed his hands on my face and said, "You radiate God's joy and love." He asked me if I was married. I answered, "Engaged". He asked me if my future husband was a believer and I answered, "Yes." He said, "God has a message for you. God wants you to know that you are healed. God does not want you to worry for one more minute about having children. He wants you to know that you will have a child….not one, but many. You will have the marriage and family that you dreamed of, to last your lifetime." My knees weakened, I sank into my chair trembling, with tears streaming down my face. These were healing words to my soul. At 16, I was diagnosed and treated for endometriosis. Doctors explained that it may be impossible to conceive a child because of scar tissue around my uterus. For years I prayed privately and passionately, that my body would heal and one day be the vessel of life, for a baby. My upcoming marriage to Kyle only intensified these prayers.

Kyle (now 40) and I (a mere 41) discovered we were pregnant in May of 2002. It was such a joy, a time for thankfulness and elation! We first saw our OB/GYN, Dr. Mc Kay, in June filled with anticipation and excitement. He examined me and performed an ultrasound. Kyle and I watched in amazement as he showed us our precious tiny baby on the monitor. The life we so longed for was right there, before our very eyes. Dr. Mc Kay then became quiet for a few moments, as Kyle and I dreamed. He then said, "Now I would like to show you your other baby. Congratulations, you are having twins!” There, on the monitor, we could see 2 tiny little babies, side by side, with 2 tiny little pulses from 2 little hearts. It was one of those moments that leaves you just speechless and in awe. Dr. Mc Kay thought that our babies might be identical, based on his scan of the placenta and membranes. We decided to wait until our baby's births, to know the gender.

These new developments created excitement among our family and friends. It was a celebration of laughter, joy, and hugs! It was an absolute delight being pregnant. Each appointment with Dr. Mc Kay showed that our babies were healthy, active, and growing! My normal weightlifting workouts were replaced with aqua aerobics and walking. I took frequent naps, especially after work, and ate well. I endured some heartburn with a smile, as the twins were much more important than any discomfort. Then Kyle and I started to notice how fast my stomach was growing, but we thought this was normal when carrying twins.

On August 30 my weight was138 pounds, so I had gained over 25 pounds from May to August. It seemed all concentrated in my stomach, waist, and rib cage area. Dr. Mc Kay now seemed a bit concerned, but he did not mention anything specific. He recommended a level 2 ultrasound as a precaution, mostly due to my age and the multiple pregnancy. We trusted his advice. The scan was scheduled within a week.

We arrived at Baystate Hospital’s Perinatal Diagnostic Center, excited to see our babies on the monitor again. We were now in the last day of our 19th week. The ultrasound technician, who was very professional, scanned the twins and told us that our babies were healthy, they each weighed 11 ounces, and all vital organs appeared healthy. She then left the room to bring one of the perinatologists (high risk obstetrician) in to continue the ultrasound exam. Dr. Glenn Markenson arrived, started his scan, and began a discussion that would change our life. "I'm so sorry to tell you, but your babies are suffering from twin to twin transfusion syndrome." We did not know what TTTS was, but presumed it was serious. He tried to show us on the monitor that ‘baby B’ had a lot of amniotic fluid, and baby A had virtually none. We were frozen with fear and that moment felt like an eternity. He asked Kyle and I to meet him in a conference room so he could explain TTTS. Kyle held me and said " Honey…everything is going to be ok. I promise you, everything with be ok. Whatever this is, we will get through this and our babies will be fine"

We met with Dr. Markenson and his nurse in a small conference room. He said that he already consulted with Dr. Mc Kay, and both agreed Markenson should follow us for the duration of our pregnancy. He then explained several methods of treatment for TTTS, the first being termination of the pregnancy either directly through abortion, or by letting nature take its course with inevitable miscarriage. This was NOT an option for us. The second was a therapeutic amniocentesis – removing the excess build up of amniotic fluid typical in TTTS. The third was an in-utero laser operation on the twins’ shared placenta. He wanted us to have an amniocentesis right away, after the consultation. However, we asked if we could have the weekend to absorb all of the information. He agreed and urged that I start bed rest today and for the remainder of our pregnancy. They also gave us some pamphlets on TTTS.

Kyle and I needed some time. We loved our babies and truly wanted to protect them. We hoped to speak to someone who has experienced TTTS. I held the booklets and flyers about TTTS in my hands as though they were life preservers, and I was about to drown. This had to be a dream, it just could not be true. My hands lovingly held my stomach, trying to comfort our babies. We prayed and talked, but he did not want me to read any more information on TTTS, at least until Monday evening. He wanted to do the reading for us, and for me to focus on all of the beauty of our babies and our lives. On Sunday morning, I called a local woman named Ann Marie, whose name was on a business card attached to a booklet. I choked back tears while trying to explain who I was and why I was calling. She understood and gave me 2 hours of her time, her sensitivity, knowledge and insight. She shared her experience, her courageous attitude and gave me names of doctors and nurses at the hospital. She urged me to contact two additional people, Mary Slaman-Forsythe, founder and director of The Twin to Twin Transfusion Syndrome Foundation in Cleveland, and Dr. Julian E. De Lia of Milwaukee, who had pioneered the laser surgery for TTTS. It was Sunday so I left voicemails for both. I could redirect my thoughts after speaking to Ann Marie. She understood and lived through TTTS, and her babies survived. My husband sensed my excitement and renewed hope

On Monday we went to the hospital for our reduction amniocentesis. The donor baby (A) had very little amniotic fluid and no visible bladder. The recipient (B) needed a liter of fluid removed from it sac.
The doctor again stressed bed rest, and scheduled us for almost daily ultrasound exams. When we arrived home our phone was ringing. It was Dr. De Lia. We talked for an hour about TTTS and its treatment. He also recommended bed rest, as well as drinking nutritional supplements (such as Boost or Ensure), both efforts we ourselves could take to overcome our feelings of helplessness. He also urged us to contact Mary from the TTTS Foundation, to get her booklet and read his paper on malnutrition in TTTS mothers. In his ongoing research, Dr. De Lia has found the majority of TTTS mothers to be severely malnourished and anemic. He also explained the details of in-utero placental laser surgery. When we concluded our conversation, we felt we had a new plan to save our babies, along with a very determined knowledgeable man on our side.

That day I started complete bed rest and a higher protein, high calorie diet. It was wonderful having potentially life saving knowledge for our babies. We decided to approach this journey one day at a time, and cherish every moment our babies lived inside of me. The next day a Federal Express package arrived containing literature from the Twin to Twin Transfusion Syndrome Foundation, and a handwritten letter from Mary. I laid in bed immersed in her book, cover to cover, and then reviewed the information again as our pregnancy progressed. It was a comfort to have this life saving knowledge for our babies. This book was by my side for the remainder of our pregnancy.

A week later we had our 2nd one liter reduction amniocentesis from baby B's sac. A few days later our doctors informed us that our babies' situation was not improving - baby A had absolutely no amniotic fluid and no visible bladder, and baby B's fluid was increasing despite the two reductions. They said we should consider laser surgery within the next 2 to 3 days to save our babies. They suggested the procedure be done in Tampa, but we explained that we had been in touch with Dr. De Lia and felt more comfortable with him. Because of our conversations with Dr. De Lia and Mary, we felt somewhat knowledgeable and in control. We knew the important questions to ask in our situation, and felt torn as we were being pushed toward laser surgery. We knew the surgery had risks and were trying with all of our efforts to avoid it. But if De Lia said it was necessary, we would do it. We went home to pray for guidance. When we contacted Dr. De Lia and gave him the reports, he recommended continuing the bed rest and nutritional supplements, and no surgery for now.

Our 3rd reduction was on September 19 with another liter removed. Baby A still had no amniotic fluid, and baby B had more build up of fluid by the next day. Dr. Markenson and his staff really felt surgery was our only hope, but they would continue doing amnios if we declined surgery. They reminded us of the potential risks of amnio reductions, and reminded us that reductions are not cures, just a means of providing relief and biding time. Dr. De Lia disagreed about the need for surgery based on the babies growth and the normal appearance of baby B’s heart. He encouraged us to remain faithful to the plan of nutrition and complete bed rest. He would let us know when he thought our situation was serious enough to risk taking me to the operating room.

Here we were, fighting for our daughters' survival and we had two different professional opinions on what to do. Even our parents heard the urgency of surgery at doctor visits. Then Kyle and my Dad both spoke with Dr. De Lia on the phone at length. In the end, though, we decided to wait a little longer. Kyle and I were ready for surgery, but agreed to wait until it was the right time. We did not want to endanger the babies anymore than they were. We trusted Dr. Markenson and his colleagues, but we also trusted Dr. De Lia who had spent 20 years investigating TTTS. It was definitely a time of high emotions and prayer that our babies would hold on and be safe.

Our plan was this (to which everyone agreed): we would continue with De Lia's recommendations on rest and diet; continue having amniocentesis as needed; and finally, seek a third opinion to assess our babies condition and need for surgery. If this consultant concluded that we needed surgery, then I would have it immediately. Markenson's office arranged an appointment at Children's Hospital in Boston with Dr. Russell Jennings. Copies of our records were forwarded to him. I kept thinking of Mary’s words, ‘It is blessed to be strong enough to ask questions, take action, and speak up and stand firm behalf of our babies.‘ We wondered. We had a 4th liter reduction without change in the twins’ status, and that information was sent on to Boston.

At Children's Hospital, three tests were scheduled for our babies. The first was a very detailed ultrasound of our babies. The second an echocardiogram of our babies' hearts, and the third an MRI of our babies' heads. Then our last appointment was to review our tests with Jennings. When he arrived, he went over all of our test results and smiled as he told us, " Kyle and Terri, I honestly was prepared to tell you that without a doubt (after reviewing your earlier medical reports), that your only option to save both or at least one of your children, would be the laser surgery, and to have it immediately. I have to tell you, after seeing today’s results, that the surgery is NOT necessary. Someone must be watching over you. Your babies look completely different today than they did in your previous reports. There is now normal fluid around your donor, and a normal sized bladder is visible. The recipient baby has normal fluid levels in the sac. The brain development is perfect, no damage to either baby. Their hearts are strong, and even though they are under some stress, the hearts are accommodating the situation just fine." He went on to say that we still have TTTS, but for some reason, it has improved and is under control. He said that if he had to give a definition of stages for this syndrome, using 1 - 4, he would have rated ours as a high 3, to now a low level one. He explained that TTTS is somewhat unpredictable and we will need continued close monitoring. He explained the chances of survival for premature babies at each gestational age, and hoped we could make it to 32 weeks. He told us to go back to Springfield, and continue doing whatever it is that we are doing because it's working! Whew, we were ecstatic!

The next six weeks were smooth, without any changes! Our recipient baby continued to have normal fluid, and our donor had a low normal fluid reading, with a visible bladder! Both babies were growing with just a small difference in size between them. Dr. Markenson and his associates were amazed. Bed rest and an Ensure or Boost High Protein supplement was easy, but I would have stood on my head in a corner for 9 months to save our babies if De Lia and the Foundation recommended it!

I started a photo album for our babies on October 8, 2002. Funny, I noticed something unusual on one ultrasound picture taken September 20 – three days before our trip to Boston, and one day before our last reduction amnio. There is an image of a face, a very clear face, of an elderly woman. It appears above what looks like the umbilical cords, above them and to the upper left. It gave me chills, especially when I noticed the date and its significance. God sent an angel to watch over our babies - to protect our babies. I’ve shown this picture to my husband, family and some friends without saying a word. Nor did I say why I wanted them to see it. Virtually all said Terri, there is a face in this picture. We believe God gave us an angel, and surrounded us with all these dedicated people to work a miracle with our TTTS babies.

The babies enjoyed growth protected in the womb for 6 more weeks, then the TTTS flared up again causing abnormalities on ultrasound. I was hospitalized, given steroid injections to speed up the maturation of the twins’ lungs, and prepared for possible delivery. By the morning of November 4, the babies’ condition worsened, and both sacs lacked amniotic fluid. It was to be the twins’ birthday! Kyle and I, surrounded by our parents, and doctors, walked to the operating room all singing ‘Oh Happy Day.’ Our precious daughters (they are girls!), Adrianna Grace (2 lbs 8 oz) and Sophia Antoinette (2 lbs 5 oz) were born!

Our beautiful, miracle, healthy babies came home on February 4, 2003. They continue to be healthy and thriving! We are truly blessed from above.

Kyle and Terri Ann
West Springfield, Ma.

Inside TTTS

-How Often does TTTS Occur

-What Happens to the Babies

-Factors Predicting TTTS

-What Are the Warning Signs

-What are the Treatments

-Is There Anything I can Do