Adam and Alex's Story

When my first daughter was 4 and my second daughter was 6 months old, I found out I was pregnant again. At 16 weeks, I measured big for size, so the doctor sent me in for an ultrasound. I was sure I was just big because it was so soon to be pregnant again--my body had not yet fully recovered from the last pregnancy. I wanted to wait longer for the ultrasound so that I could tell the sex but I reluctantly went anyway. I immediately saw two little round shapes on the screen, and panicked, knowing that the technician was about to say I some sort of tumor. Instead, she smiled, and said the reason you are big, is because there are two.

Although I had secretly prayed for twins many times, I never thought it would actually happen. Twins do not run in my family, and what are the chances of that egg splitting? I was thrilled, but afraid to act too happy, because everyone seemed to think I should be worried, or overwhelmed.

Two weeks later, while the idea of twins was finally starting to sink in, my triple screen showed an increased chance for downs syndrome. The level 3 sonogram showed no downs syndrome, but instead something called twin to twin transfusion syndrome. I was told to return in one week. With nothing more than a name, I started searching the internet to see exactly what TTTS means. I stumbled across the TTTS Foundation website, and the more I read, the more scared I became. I was scanning quickly across statistics, like only 20% of all twins are identical. Only 2% of identical twins suffer from TTTS. Of these, there is an 80% chance that one or both twins will not survive, and if they do survive, will suffer neurological damage.

Crying, I immediately told my husband this was worse than I expected and I wanted a specialist. Over the next 3 weeks, we talked to doctors in Florida who offered a surgery that seemed to be the only proactive procedure available. We found out I was not a good candidate because I was already past 18 weeks, and the TTTS was developing at a fairly slow rate, so the risk of the surgery, which at the time had a success rate of 50% (success being at least one baby survives, quite possibly with lifelong problems) was too high.

I was put on complete bedrest at 18 weeks. I was told to eat a 4000-calorie per day diet, high in fat and protein. My mother moved in with us to care for my other two children. Friends from church brought us meals and took my oldest daughter to and from preschool. Each week the sonograms showed an increase in size difference between twin A who had no fluid and had stopped growing, and twin B who had so much fluid it was putting pressure on both babies. I felt so hopeless. If I could just get far enough along for them to be born before any damage was done, they would be fine.

At 20 weeks, the problems started to escalate. I was checked into the hospital. It was just before Thanksgiving, and all I could think about was how I was going to manage Christmas shopping from a hospital bed. I was still refusing to acknowledge that Christmas that year might turn out to be the least of our problems. I began therapeutic amniocentesis. The first time, they took 3 liters. One week later, they took 1 1/2 liters. 4 days after that, they took 2 liters. I was put on medication to stop contractions. We were playing a game with time. One doctor jokingly said, you know, if baby A were to die, the problem would be solved. I vowed right then and there to invite that Doctor to my boy’s high school graduation.

If I could just make it to 30 weeks, that would be the magic number and the doctors would deliver the babies. On the morning of my 29th week, my husband and I all but begged the doctor to deliver our babies. We told her we did not want to sit around and wait for brain damage to occur. She refused. She said we could not put a scalpel in her hand and force her to deliver them. My husband went to school. 20 minutes later, the nurse said that Adam’s heart rate was dropping fast. She paged the doctor who immediately told the nurse to get me ready for an emergency C-section. I told the nurse to page my husband and get him back to the hospital.

Within minutes, I could count more than 15 people in my room. Doctors, nurses, a neonatal team, everything was a big blur, and all I could think, was please let Damon get back here in time. They tried 4 times to get an epidural in me. They said they thought they were in the right place, but it was blocked and the medicine would not push in. The doctor said I had only had 1/4 of the dose, but she had to go in anyway. I was terrified. Damon walked in the door, the doctor opened me up, and Adam surfed out on a wave of fluid (baby B in uteri was just born baby A!) I could not hear crying, and kept asking if he was ok, but no one would answer. Then Alex was born. Again no crying, no talking from anyone in the room. I began to feel everything the doctor was doing. I begged them to put me out. She said, don't you want to see the baby first? I thought, don't you mean babies? What is going on? They rolled an isolate near my bed, and said this is Adam. No, I argued, Adam is the bigger one--they said, yes, this is the bigger one. Oh god. That can't be, he was so tiny. I had never seen a baby so small. Then they put a mask on me and I was out.

When I came to, I felt empty. I was scared. I was angry. I felt sick and wanted to throw up. I had the worst headache of my life, due to the spinal fluid that leaked out while they were trying to put in an epidural. I kept asking about the boys, but it seemed no one heard me. It seemed like hours before a neonatologist finally came in and asked if I wanted to see them. I was wheeled into the NICU, bed and all. I passed by a small naked baby lying face down under a lamp. It was Alex. He weighed 1 pound 7 ounces. I could close my entire fist around his head. His leg was as long as my index finger. He had black hair. Even on his back and arms. When I saw his tiny face, with almost no cartilage in the nose or ears, but HUGE open bright eyes, I smiled. I thought he looked just like the tiny baby gorillas you sometimes see pictures of. I didn't see Adam until a few hours later. Adam weighed 2 pounds.

On the day they turned two weeks old, I was allowed to hold both of them together for the first time. I tucked both of them inside my shirt, with all the wires hanging out. They both fit in the palm of my left hand, and I covered them with my right. Alex was alert and looking around the whole time, but Adam just snuggled up to the back of Alex's head and slept. Looking back, I realize that should have been a warning sign. I would not be allowed to hold Adam again for 3 months.

The next day, the doctor paged me at home, and said I should come right away. Adam was sick. When I walked into the NICU, I immediately saw that his stomach was blown up like a balloon. He just lay there, motionless. I was shown X-rays of little gas bubbles in his intestine. Someone said something about NEC--Necrotizing Encroloitis. Yet another term I could place hatred on.

Adam was moved to another hospital for surgery. They removed a section of bowel, and after one week, moved Adam back next to his brother. Ok, another hurdle, now we'll be fine. Within 4 days, Adam's stomach was distended again. He was blue all over and we were back to the other hospital for another surgery. He now weighed 2 1/2 pounds. This time, the doctors removed more intestine, and put in an illeostomy. We had to drain the fluid from the upper intestine, then feed it back in to the lower intestine. I thought that's it. I've been strong until now. I have handled everything God has thrown in my face, but this is the last straw. My baby stunk so bad I didn't want to touch him. I thought I can't take him home like this. I cannot care for this at home. I begged God to let him stay in the hospital until this got better so I could take him home without the tubes and bags and stench.

Three months after the boys were born, Alex was coming home. It was three days after my birthday. I could not think of a better present. He was not on Oxygen. He was perfect in every way. He weighed 6 pounds 9 ounces. I did nothing but sit and hold him all day. The next day, I packed him up, and said, we are going to take you to see your bubby. They had not seen each other for 2 1/2 months. When we walked in to where Adam's isolette was, there were at least 5 people hovering over him. His illeostomy had prolapsed. There were 8 inches of dark purple intestines hanging out of his side. One doctor was trying to poke it back in, another was trying to intubate him. He was not breathing. I watched for 15 minutes, slowly rocking Alex back and forth to calm him. Every time someone poked at Adam, Alex would start screaming. The doctor finally got a tube in Adam and started him back on a ventilator. She turned around and said, "I have never seen a mother stand calmly out of the way and watch a baby be revived. You are a very strong woman." I simply said, it is not an option for this child to die. Go do what you need to do.

Surgery number 3 was to insert a Broviac catheteter directly into Adam's heart. All his veins had been blown from all the IVs and tests. We needed a central line for medicine. Surgery number 4 was to reverse the illeostomy, remove the bowel that was gangrenous, and this time, they gave him a colostomy.

My days had a routine. Dress Hannah and send her to preschool with a friend. Dress Abby and leave her at a baby sitter's. Then Alex and I would visit Adam. A few days after the colostomy surgery, Adam seemed to be improving. I could still smell the bag as I approached. I held him briefly, because I thought I should. But I would gag the whole time. How could I not feel bonded with my own child? What kind of mother am I? Then the bag burst. Bright yellow fluid came out all over my shirt. I laid Adam down, called the nurse, and did not return to the hospital for a week. I just couldn't bring myself to do it. I was told I had to come in for training, to learn how to deal with the colostomy at home. The plan was that he would have the colostomy for about 6-8 months, and then have another surgery to take it down, and hopefully he would be fine. I secretly wanted to leave him at the hospital until that last surgery. I could not deal with this. I stood at arms length, trying to pretend I was not about to throw up, while the nurse showed me how to clean the colostomy and change the bag. I did not want to touch it. Over the next several days, she worked with me every day, until over time I was able to do what I had to do. Eventually, months later, I would finally adjust, and do it with no more thought than changing a diaper. After 4 months, Adam would come home for mother’s day. I had my two boys together, I could not be happier. A nurse would visit once a week to check on the boys and make sure I was caring for the colostomy properly.

By this time, I was thankful to have the somewhat normal sleeplessness that comes from new twins at home. I wanted to take them everywhere and show them off to everyone. Look, we made it!

Damon finished law school. The kids and I moved to Colorado. Damon would join us after bar exams were over.

In August 2000, Adam had his take down surgery for his colostomy (#5). It was the greatest day ever. He thrived after that. He sat up at 1 year, crawled at 18 months, and walked at 2 years. He had surgery #6 for strabismus of both eyes. He has a diagnosis of mild spastic cerebral palsy. He wears Afro’s, and attends Speech, Physical, and Occupational therapy. He attends Balswan preschool and will begin Kindergarten next year. He gives the tightest hugs and has so much love to give.

Alex sat up at 18 months, crawled at 2 years, used a walker for a while, then began walking independently with AFOs at 3 ½. He has a diagnosis of moderate spastic cerebral palsy. He also attends PT, OT, and Speech therapy, and attends Balswan with his brother. He has a heart melting smile.

I am grateful for every minute I have with all 4 of my children. It has been a very tough road, for all of us. But we are taking it one day at a time, and sticking together as a family. Twin to Twin Transfusion syndrome is a horrible, devastating disease. It destroys the lives of otherwise healthy babies. Thank you to all those who are working toward solving the problem, rather than treating it. You make a difference.