Lexi and Katelyn's Story

“Our Story” begins on my birthday, June 24th, 1999. Nick and I found out the wonderful news that we were expecting! . A few weeks later, I had some exciting news for my husband, “Nick, Honey, I want to show you the picture of the sonogram I got today…why don’t you take a look.” I said. I could not think of how to put it into words, so I let him figure it out for himself. While looking at the sonogram picture he said “Is that two beans in the picture?” I told him that he was right. As the color faded from his face, the rest became history. We were going to be parents of TWINS! My OB immediately referred us to a Perinatologist for the rest of my pregnancy. Everything was quite normal with the pregnancy (at least I thought). I was sick often and I had become SO large and so uncomfortable! I was gaining weight very fast!During the ultrasound, there appeared to be a problem. Our perinatologist noted that one baby acted somehow "stuck", unable to move, with very little amniotic fluid. The other baby was beginning to become hydropic - as she had TOO MUCH amniotic fluid in her sac. He was telling us that there was also a big difference in size between the two babies. This appointment changed our lives forever…first, we found out we were having identical girls, and second, we were told we had a very rare disease: Twin-To-Twin Transfusion Syndrome (TTTS).

The prognosis was not encouraging for either baby. I remember we left the doctor's office in shock - not knowing what to feel. Not given many options, we were told to go do research on TTTS and learn as much as we could so we could make educated choices, in trying to save the lives of our babies. Since I was about 18 weeks along, I also was put on strict bed rest at home until delivery. I remember our absolute horror when we pulled up the TTTS foundation's web site. The brutal truth of the facts were staring us in the face. We read about an “experimental” laser surgery that cured TTTS. Only one doctor in the entire country performed this surgery! He is located in Tampa Florida. His name is Dr. Ruben Quintero. He has performed more than 200 laser surgeries (as of August 2001) with an 84% survival rate for at least one baby and 50% for both. At first we thought no way would we consider “experimental” anything…we would rather wait it out and see what God had planned for our future. The more we read about it the better it began to sound.

At this point I was about 22 weeks along, and I was having several contractions. The babies were still OK but the “donor” baby was fading fast and had not gained any weight since the last appointment. I was told we needed to give our decision within 48 hours because the donor baby was in real trouble. That afternoon we called and left a message with Dr. Ruben Quintero in Tampa. This was our last ditch effort. Later that night I got a call on my mobile phone and it was Dr. Quintero himself. The fact that he would call and listen to me talk on the phone for 20 minutes while I asked 100 questions and told him how lost and confused I felt proved to me he is an incredible doctor and person. He calmly asked for my perinatolgists’ name and number and then told us to wait for a call back early the next day. My perinatologist did in fact call early the next morning and he asked us to immediately come in so he could do a couple of tests to determine if I was a good candidate to go have the laser surgery. Our perinatolgist assured me that after talking to Dr. Quintero for over an hour about my case he felt most comfortable in sending us to Florida to have this surgery done. After a long and unusual sonogram, he soon assured us I was a perfect candidate for the surgery and this was probably going to be our best shot at both babies surviving.

After traveling from wheelchair, to car, to wheelchair, to airplane back to wheelchair to car we finally arrived at St. Joseph’s Women’s Hospital in Tampa Florida. We were welcomed with such open arms. I met everyone on Dr. Q’s entire staff and immediately felt as if I had known them my entire life. My family and the entire staff were by my side every step of the way. The surgery is done under general anesthesia, which limits the babies from moving and interfering with the delicate procedure. A small incision (1/10 inch) is made in my belly and uterus to insert an endoscope (small camera) and laser. The abnormal connecting blood vessels between the babies are then identified and sealed off by Dr. Quintero. They had found eight abnormally connecting blood vessels and arteries that were sealed and the babies were no longer connected to each other. Dr. Quintero felt confident and was happy with how everything went.

The next morning a crucial sonogram was scheduled. We were going in to make sure both babies had in fact survived the surgery. All I wanted to see were two heartbeats flickering on that screen. I could not sleep as was up most of the night praying for my babies. I was so scared to look over at that screen …when Patti, the sonographer, looked at me with tears filling up in her eyes …my heart sank for I knew one or both of my babies were gone. She then pointed to the screen and I saw two little flickering heartbeats and realized she too was crying with tears of joy. My little girls made it. I was 24 weeks along and knew I still had a long road ahead, but my girls made it through the surgery! I stayed in Florida for a week and was given orders to stay on strict bed rest once back in Dallas.

Once home, I went in weekly for sonograms with Dr. Patton. We all watched in amazement how well both girls progressed and equaled out in size. I did go into pre-term labor and was given steroid shots and daily doses of terbutiline, but I knew in my heart my girls were going to be OK. I will never forget, after having my weekly sonogram with Dr. Patton when he looked at me and calmly said “Cami we are heading downstairs to have babies today. I was 29 weeks and being wheeled in for an emergency c-section because one of the twins was in heart failure. On Monday December 20th, 1999 our life was forever changed. At 2:42 pm Alexis Noel Smith (Donor baby) arrived weighing 3 lbs 10 oz and 16 inches long. At 2:45 pm Katelyn Nicole Smith (Receipt. baby) arrived weighting 3 lbs 7 oz 15.5 inches long.

Our journey was not over…both girls were now in the hands of the doctors and nurses in the NICU. Lexi was in critical condition and in heart failure. We had received early Christmas gifts that day…our miracle babies were here. We handled and overcame many issues during our two-month stay in the NICU. Today, I am a mother of two healthy precious little girls. They are now 2 years old and have had no known major developmental delays. They both are vibrant tiny little miracles. My girls and I had TTTS; and Dr. Quintero along with so many others gave all of us a second chance at our beautiful life we share today. I find it hard to write the words to express my gratitude. I just hope our story can somehow reach other mothers or families dealing with TTTS in hopes of bringing them “little miracles” too. If our story can inspire others in their decisions at all, it would make it all so worth it.

Thanks for taking the time to read “Our Story”.

Cami K. Smith