Adrianna and Sophia's Story

Our precious daughters Adrianna Grace and Sophia Antoinette were born on November 4, 2002! Welcomed into this world, at the fragile age of 28 gestational weeks. Survivors of Twin-to-Twin Transfusion Syndrome.Their journey into our lives represents passionate faith, hope, and unconditional love.

Kyle & I met in April 1997, became engaged in April 1999, and married on September 2, 2000. We both desired children in our life. At 16, I had been diagnosed with endometriosis and treated with surgery and medication, until 21. Doctors explained that it would be virtually impossible to conceive a child, due to excess scar tissue in my uterus. On May 18, 2002, Kyle (40) and I (41) discovered we were pregnant! It was pure joy, thankfulness, & elation! Our first appointment with our OBGYN, Dr. Mc Kay .was 06/21/02. We arrived at his office, full of anticipation & excitement. Dr. Mc Kay examined me and did an ultrasound. Kyle and I watched in amazement as Dr. Mc Kay showed us our precious tiny baby on the monitor. Dr. Mc Kay was quiet for a few moments, as Kyle & I admired our baby. Dr. Mc Kay said, “Now I would like to show you your other baby, congratulations, you are having twins! There, on the monitor, we saw 2 tiny little babies, side by side, with 2 tiny little pulses from 2 little hearts. It was one of those moments that you are just speechless and in awe. We were ecstatic. Dr. Mc Kay expressed that our babies were identical, as there was a very thin dividing membrane between them.

The summer was wonderful! It was an absolute delight being pregnant. Each appointment with Dr. Mc Kay revealed that our babies were healthy, strong, active, and growing. Kyle & I started to notice how fast my stomach was expanding. This was our first pregnancy and we thought this was normal especially carrying twins. Dr. Mc Kay mentioned in June, that because of my small stature of 5’ that I would be very large, by the fall. On 8/30/03, my weight was 138 pounds, I gained over 25 pounds from May to August. It was all in my stomach, waist, and rib cage area. Dr. Mc Kay invited us into his office, after our 8/30/02, appointment. He seemed a bit concerned, not mentioning anything specific. He told us that it was a necessary precaution to schedule a level 2 ultrasound, due to my age and our multiple pregnancy. We trusted his advice. Level 2 Ultrasound was confirmed on 9/06/02 at Bay State Hospital, with a follow-up at Dr. Mc Kay’s 9/09/02.

We arrived at Baystate Hospital with the same excitement and enthusiasm, to once again, see our babies on the monitor. We were now in the last day, of our 19th week! During our appointment, the ultrasound technician very professionally went about the business of scanning and measuring our babies. She gave us wonderful news that our babies were healthy, both weighed 11 ounces, had good bone development, and vital organs all healthy. She then left the room and said one of the Perinatologists would be in. Dr. Glenn Markenson arrived and continued the ultrasound exam. He started a conversation that would change our life. "I'm so sorry to tell you, but your babies are suffering from Twin-to-Twin Transfusion Syndrome," I did not know what that 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 none.

We met Dr. Markenson, and a nurse, Kathy in a small conference room. Kathy handed us literature on Twin-to-Twin Transfusion Syndrome and Dr. Markenson explained: Twin-to-Twin Transfusion Syndrome (TTTS) is a disease that strikes about 10% of all identical twin pregnancies. In the US, it affects over 7,500 babies—or 3,800 pregnancies—each year. This serious condition occurs when twins share a single placenta, which contains blood vessels connecting the twins’ blood streams. One baby (the recipient) may get too much blood, while the other (the donor) is losing blood through the abnormal connections. The recipient may die of heart failure from a cardiovascular system overload, and subsequent over-production of amniotic fluid. The donor may die from the loss of blood, and tends to have very little amniotic fluid. While the twins begin development totally normal, the placenta abnormalities cause their subsequent death or serious birth defects. The loss rate may be as high as 80 to 100 percent for twins who develop TTTS at mid-pregnancy . TTTS babies may die in the uterus or at birth from prematurity. More than half those who survive suffer from many serious birth defects including cerebral palsy.

Dr Markenson said that he consulted with Dr. Mc Kay, and both agreed our care needed to be transferred over to Dr. Markenson’s office, for the duration of our pregnancy. He went on and explained several methods of treatment for Twin To Twin Transfusion Syndrome. The first option was termination of the pregnancy, either directly through abortion or by letting nature take its course with inevitable miscarriage. The second was feticide of one twin, or selective reduction, meaning terminate the life of one twin, so that that the other baby can survive. These two were absolutely not options for us. The third was a therapeutic procedure, Amniocentesis Reduction. Reducing the excess amniotic fluid that developed around the recipient baby, done via amniocenteses. At a 50% chance of surviving twins, this procedure reduces pressure off of the recipient baby and mothers uterus. The fourth was an in-utero laser surgery only performed by 2 or 3 surgeons. Dr. Markenson, wanted us to have an amnio reduction right away, after the consultation. We asked if we could have the weekend to absorb all of this information.

We spent the weekend in shock, as though this was a dream, it just could not be true. On Sunday morning, I called a local woman, whose name was on a business card attached to the Twin-to-Twin Transfusion Syndrome Booklet. Her name was Ann Marie Richard. She gave me 2 hours of her time, sensitivity, knowledge, insight. She urged me to contact 2 key people - Mary Slaman-Forsythe, the director and founder of the Twin to twin Transfusion Syndrome Foundation in Ohio and Dr. Julian De Lia of Wisconsin, who pioneered a special laser surgery for Twin to Twin Transfusion Syndrome.

On Monday, 9/9/02, Kyle and I went to Baystate Hospital, for our Amniocentesis reduction. Our Baby A, was the donor and Baby B, the recipient. Our Baby A had very little amniotic fluid and no visible bladder. Dr. Markenson took 945 cc’ s of amniotic fluid from our Baby B’s sac. He continued to stress modified bed rest, Dr. Markenson scheduled us for daily ultrasound exams. Our phone was ringing when we arrived home from the hospital, Monday morning. It was Dr. De Lia. We talked for ½ hour about TTTS, its treatment, and the efforts we ourselves could take to overcome our helplessness enduring this deadly disease. He endorsed complete bed rest, lying on my left, and to consume plenty of nutritional supplements (such as Boost or Ensure.) He wanted to make sure we contacted Mary from the Twin-to-Twin Transfusion Syndrome Foundation and asked us to go online and read his paper on nutrition. In his research, Dr. De Lia found that the majority of TTTS mothers are severely anemic and low in blood proteins. He went on to explain the placental laser procedure he pioneered. We concluded our conversation, with a very determined knowledgeable man on our side. I started complete bed rest and my new higher protein, high calorie diet from that day forward. On Tuesday morning, 9/10/02. a federal express package arrived, containing all of the literature from the Twin-to-Twin Transfusion Syndrome Foundation, including a handwritten letter from Mary Slaman-Forsythe . I laid in bed and immersed myself in the book, cover to cover, constantly reviewing information. This book was by my side for the remainder of our pregnancy. It was wonderful to be equipped with all of this life saving knowledge for our babies.

We had our 2nd Amniocentesis reduction on 9/12/02, with 872 cc of amniotic fluid removed from Baby B’s sac. During our ultrasound exam on 9/16/02, our doctors informed us that our babies’ situation was not improving. It was worse. Baby A had absolutely no amniotic fluid, no visible bladder and Baby B’s fluid was constantly increasing, despite the efforts of 2 amnio reductions. Our doctors told us that we should consider having laser surgery within the next 2 to 3 days, to save our babies. The surgery is only an option for pre-viable pregnancies (less than 25 weeks), where delivery of the TTTS twins is not an option They suggested the procedure be done in Tampa Florida, with Dr. Quintaro. We explained that we had been in touch with Dr. De Lia, since 9/9/02 and if we required surgery, we felt more comfortable with Dr. De Lia. We did not object to Dr. Quintaro, but we had already established a relationship and trust with Dr. De Lia . Our doctor’s wanted us to make a decision. They contacted Dr. Quintaro’s office in Florida. Through our conversations with Dr. De Lia and reading the literature from Mary, we gained the knowledge to help us feel as though we had some control. We knew what questions to ask, what fetal measurements and statistic were important to our situation. We felt torn as we were being persuaded towards surgery. We read about the risks and were trying with all of our efforts to avoid it, but knew we would have it done, without a doubt, if Dr. De Lia said it was necessary. We went home praying for guidance.

We contacted Dr. De Lia. We gave him all of the reports & statistics on our daughters. He continued to recommend complete bed rest and his guide for nutrition. No plans for surgery.( At this point, our doctors at Baystate, still recommended modified bed rest , nothing specific about nutrition.) We followed Dr. De Lia’s advice.

Our 3rd reduction was on 9/18/02 with 970 cc’s removed . Our Baby A, remained without any amniotic fluid, no bladder, and Baby B had more build up of fluid by 9/20/02. Dr. Markenson and his staff, really believed our only hope was surgery, and it should be immediate. They would continue doing as many amnio reductions for us, if we declined surgery. They reminded us of the potential risks of amnio reductions , 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. 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 critical enough to perform laser surgery. Mary Allen, from Dr. Quintaro’s office called us and she was very sweet. She was already informed as to our status with TTTS. She explained Dr. Quintaro’s laser surgery procedure.. She could have arrangements made for us to be in Florida within 2 days. Upon arrival, we would be evaluated , to make sure we are candidates for surgery. Based on information from Dr. Markenson, Mary Allen felt as though we were very good candidates. We had so many important educated people on our side.

t was September 18, we would continue with Dr. De Lia’s plan, vigilant bed rest, combined with en sure, boost, high protein diet, eating every 2 to 3 hours. Continue having amnio reductions as needed, and ask for another opinion, to assess our baby’s condition and check the need for surgery. If this exam concluded we needed surgery, then it would be immediate. Everyone( Kyle & I, our parents, Dr. Markenson and Dr. De Lia) agreed this was a good decision, Dr. Markenson’s office arranged an appointment at Children’s Hospital in Boston with Dr. Russell Jennings for Monday, 9/23/02. Copies of our records were forwarded to Dr. Jennings.

Our 4th Amnio reduction was 9/21/02 with 980 cc of fluid taken from our Baby B. Our Baby A, was still ( stuck) with no fluid and no bladder. Report forwarded to Dr. Jennings in Boston. 9/23/02. We traveled to Children’s Hospital in Boston. Three tests were scheduled for our babies. The first was a very detailed ultrasound of our babies. The 2nd was an echocardiogram for our babies’ hearts and the 3rd was an MRI, of our babies’ heads. Our last appointment at Children’s hospital was with Dr. Jennings, to review our tests. He went over all of our test results and smiled as he told us this: “ Kyle & Terri, I honestly was prepared to tell you that without a doubt, ( after reviewing your medical reports through Saturday 9/21/02) that your only option to save both of your children, or at least one of your children, would be the laser surgery and have it immediately. I have to tell you, after seeing your test results today, the surgery is NOT necessary. Someone must be watching over you. Your babies look completely different today, than they did from your previous reports. There is now normal fluid around your donor baby 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 stress, their hearts are accommodating the situation just fine.” He went on to say that that we still have Twin-to-Twin Transfusion Syndrome, 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 1. He explained that TTTS is very unpredictable and we will need continued close monitoring, as it can change from day to day, minute to minute.

The next six weeks were smooth, without any changes! Baby B, our recipient baby continued to have normal fluid and our donor Baby A, had a low normal fluid reading, with a bladder showing! Both babies were growing with just a small difference in size between them, Dr. Markenson and his associates were amazed. Bed rest and ensure, boost, high protein diet were quite normal. We did not have any other amnio reductions. Our little babies had enjoyed growth in my protected womb for the last 6 weeks and then our Twin To Twin Transfusion Syndrome ignited. We were able to reduce our doctor visits to 2 or 3 times a week, during these 6 weeks. On October 29, we started showing signs of absent diastolic flow. I was given steroid injections to expedite the growth of our babies’ lungs, to prepare for possible birth and I was hospitalized. By the morning of November 4, our babies had reverse diastolic flow and both sacs were emptied of amniotic fluid. It was to be our babies’ birthday! Kyle & I, our parents, and doctors, walked to the operating room, singing “Oh Happy Day”. Our precious daughters, Adrianna Grace (Baby B) 2 lbs, 8 oz, and Sophia Antoinette ( Baby A) 2 lbs, 5 oz. were born!

Our beautiful babies came home on February 4, 2003 after 90 days NICU, followed by 13 more weeks of full time professional nursing care in our home. Adrianna & Sophia developed infant reflux at 1 month old. The reflux created blockage in their airway when they spit up. This situation was so frightening, but we were equipped with monitors, suction equipment at home, plus oxygen, and local ambulance responded within 1 – 2 minutes of our phone calls. Our daughters outgrew this condition this past December at 13 months old and are now so healthy!! We are truly blessed by our precious daughters! God has surrounded our family with love and protection. Thank You!

Kyle & Terri Ann Boardway

West Springfield, Ma.