We lost our twin boys, Brock Antony and Brandon Malachi in December 2003 at 27.4 weeks gestation. I had gone to the emergency room on December 6 for severe rib pains related to a horrible cold. During the visit, they found both of the boys’ heartbeats.

On December 8, 2003, we had a scheduled ultrasound appointment to check on the babies. I was having an ultrasound every other week because one of the babies was not growing as much as the other. The specialist didn’t seem too worried about the problem. He just wanted to keep tracking the growth of both babies. We had never heard the term TTTS before the babies were born. During the ultrasound, the tech did all the stuff on Brock first and then began doing it on Brandon.

It was when she tried to get his heartbeat, that I realized something was terribly wrong. I had already had 6 ultrasounds and knew what to look for and listen for when doing the heartbeats.
She said that there was no heartbeat and that she was going to go get the doctor. The doctor came in and began trying to find Brandon’s heartbeat to no avail. He said that Brandon had passed away. He said he didn’t know why but that sometimes it happens. He admitted me to the hospital for further observation on Brock and myself. I remember him telling me that it may be best to get Brock out before something happens to him as well. My husband and I felt like our hearts had been ripped out of our chests. We went next door to the hospital, in shock, to get admitted.

We were admitted at 9am on December 8. At 10pm that night, we were told that they didn’t like the tracing of Brock’s heartbeat and that it would be best to get him out as soon as possible. We agreed that it was time. They scheduled me for a c-section at 10:45 pm. At 11:45pm, Brock was born and at 11:47pm Brandon was born. Of course Brandon was stillborn. I didn’t get to see Brock at all while I was in the operating room. In fact, I didn’t get to see him until about 3 hours after he was born. The nurses came into the room with him so we could see him before they took him to NICU. It was an amazing moment. They told us that he was in critical condition and on life support. He had so many tubes and IV’s hooked up to him that I instantly started crying. They opened the little door on the isolet and let my husband touch him. We started talking to him and calling out his name. I was so amazed when he opened his eyes and responded to us. He gave me a little glimpse of hope when I saw his beautiful blue eyes staring back at us. They took him out of our room and over to NICU.

The pediatrician in the OR worked on Brock for 2 hours trying to keep him alive and give him a chance. Brock required a blood transfusion because he only had 10% of the blood he should have had, and that blood was all in his stomach. They had drained the blood from his stomach. He was on a ventilator because he couldn’t breathe on his own at all. He was on total life support, he was receiving blood transfusions, having blood tests done, his bowels weren’t working, his kidneys were not quite developed fully, his lungs were underdeveloped. His prognosis at that time was unsure, every time he was stimulated his O2 would drop dramatically. It was so scary and saddening. Our little angel was fighting so hard to just stay alive.

Over the next 3 days, he had many tests done, many ultrasounds of various organs, he was poked and prodded so many times for such a little and young guy. But each day he seemed to be progressing very well. A little at a time, he began to get better. On Thursday, they did another ultrasound of his brain to check for bleeding. On that same day I was discharged from the hospital. My husband and I spent a little more time with Brock before going home and getting a little rest. We got home around 1pm. At 3:30pm, we got a call from the hospital. The doctor wanted to meet with us that afternoon at 5pm. At that time, we prepared ourselves for the worst. We knew deep down, that things must have been getting worse.

At the meeting, the doctor informed us that Brock was responding well to all the treatments. His lungs were doing much better and the ventilator settings were moved down considerably. His kidneys were doing what they were supposed to be. He was retaining the blood they had given him and was requiring much less in transfusions. His stomach was doing much better, as were his bowels. Everything seemed to be going great until they told us that he had developed a grade 4 brain hemorrhage. They said that with that type of hemorrhage, there was no chance at him surviving. We were given a decision to make, pull the life support or continue to keep it going. We were asked to go home and sleep on the decision before we made it. We went back on Friday morning, December 12, 2003. We were prepared to make our decision and pull all life support.

At 1pm, we proceeded with the plan to remove the life support. We had them remove it and bring him to a family room we were in at the NICU. They had wrapped him up in blankets like a newborn. When they brought him in to us, they handed him to me. I called out his name and he opened his eyes and responded to both of us. We spent almost 2 hours with Brock in that room without life support of any kind, before he passed away in my arms. He struggled so much to stay with us that afternoon.

We still have a very hard time sometimes. We were so happy when we found out we were having twins. We had made so many plans for the two of them, for our future. It seems cruel that they were taken from us before we were ready. I just wish I had known about this disease before they were born. I didn’t find out that was the problem until after they were born.

Shari, Mommy to Brock and Brandon, my Heavenly TTTS Angels Brock (12-8-03 to 12-12-03) Brandon (12-8-03 stillborn) M/C 5-6-04