The Story Of Us

Conor and Patrick

My husband and I were in the process of adopting a baby boy from Korean when I discovered I was pregnant. I found out I was having twins via ultrasound at 5 weeks. Normally doctors do the ultrasound at 12 weeks but due to my infertility history and previous miscarriage they did it early on me.
The morning I was leaving for the hospital for my ultrasound, the phone rang and the adoption agency told me that they had a beautiful Korean baby boy waiting for us. It was a bittersweet moment for Dave and I as we walked out the door heading to the hospital. The ultrasound showed I was having twins and therefore we were very reluctant to continue with the adoption process. It was with sadness that I told the adoption agency that we could not continue with the adoption.
My pregnancy went fairly well up until around 5-6 months when I started to rapidly gain weight and a pain in my left rib cage was increasingly getting worse. I was told at each doctor check-up that "I was expecting twins....what do I expect??" I remember distinctly on my 5 month ultrasound that the radiology technician could not get a "clear" picture of my babies. I was told that my babies were in awkward position and after a lengthy stay on the examining table, I was sent home with a "clean bill of health". By the time I had my sixth month ultrasound, which was around Christmas time, I was in extreme pain. I couldn't lay down as the pain and pressure against my ribs and lungs were unbearable. My heart rate would race from time to time. I had to sleep propped up with about 4 pillows. My left rib cage was so sore and only getting worse. Little did I know that my babies were in severe danger, as well as my own health.
At my seventh month ultrasound, things took a turn for the worse. The technician could not see "anything" clear at all. He had me on the examining table for 2 1/2 hours, which a normal "ultrasound" should take 45 minutes. The pain for me was still just as bad but I accepted it as I was told that this is expected in twin pregnancies.
During this one particular exam, the technician put the "wand" down on my belly and threw his hands up in the air and exclaimed, "I've never seen anything like this in my life." I politely asked him if he should go get the Radiologist at this point and he said, "no, it's not necessary." He proceeded in trying to get pictures and measurements of my two babies and ended the session. The Radiologist did come in, as is required , only to quickly scan the "ultrasound" as the technician told him "that everything looked OK". I was then sent home. The following morning, I had my bimonthly doctor's appt. with the obstetrician and I had told him how rude the technician was and felt concerned about the ultrasound. I asked this doctor if another ultrasound can or should be performed, and he reassured me that "everything looked OK" according the technician's reports. It was stated that both babies were three pounds each and the ultrasound photo's showed both babies facing each other.
What really happened was that the technician took a mirror image of Conor.
The OB took my measurements of my belly and chuckled that I was larger than a 40 week pregnant woman, I was only 28 weeks pregnant at this time.
About two days later, on a Monday, I called my OB and expressed the concern I was having about my pain in my ribs, my heart racing, and more importantly, I had stopped feeling the babies moving inside of me. This, of course, concerned me greatly. The doctor told me over the phone, to do "kick counts" ; this is where I sit quietly for about 10 minutes and count how many times the babies kick/move. I did as I was told and reported back that I felt some movement but not a lot. The doctor told me that the babies are getting bigger and they can't move around a lot anymore. I accepted this information as I figured that the doctor was the professional in this case.
On Wednesday morning, I was getting more and more concerned over the lack of movement of my babies. I called the OB about 6 AM, I figured I'd wait until the doctor woke up. I again followed the doctors orders. I called again, and at this point I felt like I was overreacting to my symptoms; however, I was then told to come into the maternity ward for a fetal monitoring hook up.
The fetal monitor only traces the babies heart rates; They had a terrible time finding the heart rate for Baby B, Patrick. They would find it, then they would lose it. They themselves were getting frustrated as then OB at this time called in the head OB of the medical group. He showed up 30 minutes later, and had the same level of difficulty in tracing Patrick's heart rate. About 2 hours later they sent me home giving my husband and I the impression that everything is OK.
Once again, Friday morning I called the OB, and once again went in for another fetal monitoring of the twins. Once again, I was sent home. NO ULTRASOUND WAS PERFORMED AT THIS TIME AND I WAS NOT SENT TO ANY 'HIGH RISK' DOCTORS NOR HOSPITAL.
It was now Sunday evening and once again I called the doctor to express the same symptoms were getting worse. The OB told me to show up Monday at 8 AM to perform another ultrasound.
During that entire evening I began vomiting and having severe diarrhea, I couldn't wait to get to the hospital to find out what was going on with my babies. It was around 10 AM when a Radiologist was called in only to diagnose me as having Twin to Twin Transfusion Syndrome.
I had no clue as to what that was or what was happening to my babies. They arranged an ambulance to take me to a hospital with a Neonatal Intensive Care Unit (NICU) "just in case I delivered there". I was told that I was going there to be examined and stay there for a few days.
At this time I was now approaching my 30 week gestational age of the twins. I arrived at Baystate Hospital 1 1/2 hours away via ambulance with my husband following us in his car. It was 3:30 in the afternoon now, the OB there did an ultrasound right away and told us that we were losing both babies, and that my own life was at stake now.
An emergency C-section was performed and my identical twin boys were born at 3:55 (Conor) and 3:56 (Patrick) only 25 minutes after my arrival.
The date was Monday, January 20, 1997.
I was told 4 hours later that I can go see my babies. The horror of seeing these tiny skinny human beings hooked up to wires and lying there in this dark incubator was a vision that will haunt me forever.
The following morning my husband and I were called to a meeting with the NICU doctor/nurses. I thought that this was standard procedure , that all parents met with the doctors and nurses for premature babies.
But I was wrong. This was a special meeting. This was a meeting that changed our lives forever. We were told that our one son, Conor, had a severe brain bleed, the worse kind of brain bleed that there is. I also found out that Conor was resuscitated shortly after birth. The doctor's can't say when the brain bleed occurred. It did happen , however, immediately before , during, or after their birth. Patrick' s life was also "iffy", but his head ultrasound showed no brain bleed, but he still had many, many hurdles to jump. Conor stayed at this hospital for 5 months, after 6 shunt revisions. He needed a shunt at day 2 of his life because the brain bleed caused him to have Hydrocephalus, a serious disorder where the brain swells and only more brain damage can occur if the swelling is not stopped somehow. Conor finally came home in May for only about 5 days. He became extremely sick and we were losing him. We rushed him back to Baystate Hospital and was told that his shunt had become infected,therefore, the fluid surrounding his brain was infected, thus causing more brain damage. Conor had a terrible time trying to eat, as most brain damaged babies do. They would feed him via a tube that went down his nose. The doctor's kept trying to sway us to put a feeding tube in him. We, thankfully, fought the doctors on this one and after many many weeks of trying to get him to eat again, my husband and I finally sent him to Boston Children's Hospital. Within 3 weeks they had Conor eating from a baby bottle!!!!! He came home in June, 1997. To make a very, very long story shorter, Conor went in and out of Boston Children's for several more shunt revisions until they could get it working correctly. In October, of 1997 he started to develop Infantile Spasms, a very severe form of epilepsy where once these seizures begin the prognosis of the patient is extremely dim and little hope of any type of quality of life. Conor held true to that prognosis. He was cortically blind, cortically deaf, extremely sensitive to touch (in a negative way), developed a duadanal ulcer (extremely rare in babies), this caused him to throw up blood in addtion to having severe reflux where he couldn't keep much food down. AT the age of two, we decided to remove Conor from all of his medications as it looked like we were losing him, once again. He seemed to be slipping into a coma and if he were to die at this time at least he would go peacefully. Within 24 hours after stopping all his medication, Conor could hear, he began to eat again, he was more receptive to touch, and life seemed to be getting better. For the next two years Conor's life improved a little and he was definately more comfortable and happier. Christmas week of 2000, Conor started getting sick again. He wouldn't eat and all he did was sleep. We thought that this "might be it for Conor" but always kept our guard up because he had done this episode many many times in his short life. But we were wrong. On New Year's Day Conor Joseph Archibald decided to leave this world and go onto a more "wonderful world". He went quickly and peacefully. No one even got to say goodbye to him because we kept thinking that he was going to pop back again. Our little angel is now watching over us and hopefully, if I'm good enough, I will someday be reunited with my baby again. We love you Conor and miss you terribly. Please guide us and pray for us. I promise you Conor that I will do everything in my power to teach doctors/hospitals/nurses and parents about Twin To Twin Transfusion Syndrome and to listen to the mom's complaints. Love, Mommy