Christopher & Colin – 26 weeks
Twin-to-Twin Transfusion Syndrome
Our journey through Westchester Medical Center (WMC) and Maria Fareri Children’s Hospital began very suddenly. After ending up in the Emergency Room in Orange County, NY at only 25 weeks gestation with twins for severe back pain (divine intervention I suppose), it was discovered that my baby boys might be suffering from twin to twin transfusion syndrome (TTTS). TTTS is a disease that affects only identical twins. It is the result of an intrauterine blood transfusion from one twin to another, where blood is transferred disproportionately from one twin (donor) to the other (recipient). The transfusion causes the donor twin to have decreased blood volume, retarding the donor’s development and growth. The blood volume of the recipient twin is increased, which can strain the fetus’s heart and eventually lead to heart failure. In early pregnancy (before 26 weeks), TTTS can cause both fetuses to die, or lead to severe disability.
My obstetrician, a wonderful doctor and friend, Dr. Lynne DiCostanzo, quickly met me in the ER and proceeded to call down to Dr. Daniel Cohen at Mid Rockland Imaging in New City, NY, a specialist in his field. The following morning, my husband Keith and I drove down to see Dr. Cohen, where it was confirmed that my babies were indeed suffering from TTTS and Baby B (recipient) was in congestive heart failure. We named him Colin. We were told that it was very likely Colin would not survive. We quickly drove down to WMC sobbing and feeling devastated, all while trying to make arrangements for our 15-month-old son, Chase. We arrived at the hospital and were immediately immersed in a situation that has become a blur—fetal monitors, heart tracings, probes, ultrasounds, doctor jargon, and lots of preparation for the worst. The physicians tried to explain everything from reasons for procedures to what to expect, but time was so critical, it was beyond overwhelming. There are a number of different therapies used to treat TTTS. The most traditional treatment is through serial amniocentesis (also called amnio reduction), which involves periodically draining amniotic fluid from around the recipient twin in an effort to reduce the pressure of the amniotic fluid and decrease pressure on the heart. After undergoing three separate amnio reductions over approximately 30 hours, the doctors were unable to stabilize Colin’s heart rate and if he were to pass away in utero, Baby A, whom we named Christopher, would also pass due to an instant increase in blood flow to him. Therefore, the thought was to deliver the twins, expecting that Colin would not survive, but to save Christopher.
When the physicians could not find a reassuring fetal heart rate on Colin, I was prepped for the cesarean section and on July 1st, 2007, at only 26 weeks 1 day gestation, Baby A (Christopher James Singer) at 3:30am and Baby B (Colin Anthony Singer) at 3:31am were born. July 1st was a good day to be born…it was my grandfather, Anthony Esposito’s birthday, who was also a very sick baby at birth and not expected to survive. They weighed only 630 grams and 1130 grams, respectively, with most of Colin’s weight due to hydrops fetalis and excess amniotic fluid. I didn’t get to see them at birth—it was all so critical and they were whisked away immediately to the NICU. My husband and I just cried, hoping for the best, but expecting the worst. The time ticked by so slowly, it was excruciating. After I was sent to recovery, my husband headed over to the NICU and made his first step into what would be our second home for the next 17 weeks and where he would meet our babies for the first time. The next time I saw him, I could immediately see past the smile on his face and see the fear and sadness in his bloodshot, swollen eyes. He tried his best to be positive and prepare me at the same time as he wheeled me to see them. Into their room I went with Christopher in the incubator to the left and Colin to the right. And then…I gasped, cried and prayed. How could these little creatures, my precious babies, actually be alive? To explain what they looked like is impossible, but forever burned in my memory. They were the smallest babies I had ever seen or could have ever imagined. So premature that the fat hadn’t begun to store beneath their skin, so they appeared transparent. Our babies were blue from the lights to help combat their jaundice, with eyes covered to protect them from the lights. Their faces covered with tape from the ventilator tubes. Their miniature bodies covered in IV lines and monitor pads. Colin was hydropic—hydrops fetalis is an overwhelming accumulation of fluid. Colin also had scalp edema and placentomegaly with respiratory distress syndrome. Because of this, he had additional chest tubes and was so swollen, his skin was “weeping” to release the excess amniotic fluid. His skin was purple and ripped and his head and face so engorged, he was not recognizable as a baby. What a way to meet your new babies. I prayed like never before and I knew God was there. He was the reason they were both still alive and He would be there to protect our babies and carry us through this difficult journey. Later that day, we scheduled to have our babies baptized in the event they did not survive.
The next few days were a blur. We tried our best to understand the physician’s explanations of diagnoses, procedures, etc., but it was difficult and overwhelming. Our babies had so many diagnoses. In addition to extreme prematurity and the stresses from the TTTS, Christopher was diagnosed with respiratory distress syndrome, anemia, requiring a multitude of blood transfusions, sepsis, a heart murmur, a heart condition of the patent ductus arteriosis (PDA), reflux and hypothyroidism. Colin had all these difficulties as well, with the exception of hypothyroidism, but in addition had pulmonary hypertension, seizures and an intracranial hemorrhage in the thalamic region—a dreadful diagnosis. It is a rare and uncommon area of the brain to have a bleed and the results could be debilitating. There is no way to tell other than to wait and see. We were devastated by the news. When the twins were about two weeks old, Colin was doing poorly. He was having seizures, he had a terrible brain bleed, his lungs were not functioning properly, even with the ventilator, he was having a high number of desaturations in oxygen levels, his heart was not pumping blood properly to his organs, he was having many occurrences of bradycardia, and the list went on. We were forced to have that talk—the one where we had to think about taking Colin off life support. How do you describe this other than utter devastation? Besides thinking of losing your child, the thoughts of how to make that decision are overwhelming. I remember escaping to my bedroom that night, alone, and crying so hard I wanted to jump out of my skin. I remember thinking that I just wanted to wake up…I was hoping it was all a bad dream and I just wanted to wake up. How do you bury your baby? How do you do that? We had that dreaded conversation at Colin’s bedside (next to his incubator) and I still say to this day think that Colin heard the conversation and decided he would not give up. The very next day, he finally made some progress and his organs began to function…lungs, heart, etc. It was a miracle in every sense of the word. God was protecting him and us.
Not all of our experiences were quite as frightful. We had many amazing moments in the NICU. When Christopher was two days old, we held his tiny hand for the first time. We had this moment with Colin when he was three days old. We were able to hold Christopher, skin-to-skin for the first time when he was 14 days old and Colin when he was 20 days old. Both babies had heart surgery, called PDA ligation, and did remarkably well. We met amazing milestones as well. In week 6, the babies moved to their first “step-down” room. In weeks 7 and 8, Colin and Christopher wore their first T-shirts, respectively. In weeks 10 and 11, the babies had their very first bottles and were finally moved into bassinets. The weeks were filled mostly with progress, but some level of regression as well. The process was filled with “ups” and “downs”. One day, during a routine visit, Christopher suddenly had a severe bradycardia episode. His oxygen saturation decreased to 7% (it should be above 95%), they called a “Code” and began CPR. Wow…very scary to say the least. He made it through like a champ. The same had happened to Colin on several occasions, but we were not there to witness the event. Week 12 brought a major step back for Colin. He suddenly became very ill, unresponsive, high fever and low oxygen levels. He was re-intubated and placed back in an incubator. It was such a huge regression for all of us. He was later diagnosed with aspiration pneumonia and time would tell how this would affect him for a very long time. After about a week of intensive antibiotic therapy, Colin was back in his bassinet, but on much higher levels of supplemental oxygen via nasal cannula.
On October 10th, 2007, at 101 days old, Christopher was discharged after spending 14 weeks in the NICU, with only a prescription for Synthroid. The day was bittersweet. We were celebrating the day that Christopher would see sunlight for the first time, breathe fresh outdoor air for the first time, take a car ride for the first time and most importantly, go home and meet his big brother Chase for the first time. But on the other end of the spectrum, we were torn by having to leave Colin at the hospital. We knew he was in excellent care, but it was very hard to walk out the door that day with only one baby.
Then finally, on October 26th, 2007, at 117 days old, Colin was discharged from the NICU after 17 weeks. What a relief…or so we thought. Besides several medications, Colin was sent home on supplemental oxygen and an apnea/pulse oximeter monitor. I set up shop in the twins’ nursery where I would pump breast milk, feed and rock the babies to sleep, and sleep myself for the next few months. The first few weeks home with Chase, Christopher and Colin were extremely difficult—way more difficult than I had predicted. Chase was only 19 months old at the time and a baby in his own right. Colin had many occurrences of desatting, especially during feeds, where his oxygen levels would go down into the 60% to 70% range and he would turn blue. He would also have episodes of bradycardia where his heart rate would drop dramatically and he would require physical stimulation to get the blood pumping again. Very scary stuff indeed, but among all of these difficulties, we had witnessed a true miracle and are the luckiest family in the world. God and Mother Mary graced our children with health and safety and there is nothing in life more precious than the gift of a healthy child. And in leaving the NICU, how do you possibly thank all the medical professionals? How do you thank someone for saving the life of your child? We, as a family, will be eternally grateful for Maria Fareri Children’s Hospital and all who give their lives so readily to making true miracles a reality.
We had many more visits to Maria Fareri Children’s hospital over the next year. Colin was admitted four more times to the pediatric unit for various respiratory issues. We spent 7 days in the peds unit over our first Christmas, another 5 days in February, 3 days in mid-March (over Chase’s 2nd birthday) and 5 days in late-March.
On September 20, 2008, Christopher James and Colin Anthony were baptized before their entire family (over 100 people) as healthy babies at St. John’s Church in Goshen, New York, with a reception to follow at Limencello Restaurant. It was the first time many members of our family were able to meet the boys and it was a true milestone for all of us.
Colin was finally able to shed his wires and come off supplemental oxygen for good in October 2008…at 15 months old.
And here we are four years later. Chase turned 6 years-old on March 14th and Christopher and Colin will turn 5 years-old July 1st. They are happy and healthy and meeting most milestones set forth for them. The boys are running, talking, fighting, climbing, coloring, swimming, feeding themselves, going to school and the like. What a journey…
We are so very fortunate…our story, the Singer Family story, is a story of miracles. How blessed we are!