A unique twin

Gustavo Enrique is a very sharp kid. Curious, active, quick with a smile. Every time I look at him I thank God for the privilege of having him in our lives. He was born September 20^th 2004. Like every year since his birth, he has nightmares and restless sleep a few days after July 4. I think I know why.

My wife's pregnancy went fairly normal for the first few weeks. Once we found it was a twin pregnancy we were overjoyed. Two kids for the price of one! A challenge for sure, but we were thrilled.

Around 18 weeks after a few tests came out a bit unusual, my wife's doctor referred us to a perinatologist for a more complete diagnostic. We went to Centro Médico to the doctor, a prestigious professional. He quickly diagnosed TTTS, Twin to Twin Transfusion Syndrome. He told us to come back in two days while he double checked some tests. We left the office numb. We had never heard of TTTS or its consequences. We got home and I got on the web. I quickly found the website of the TTTS Foundation and my hearth grew heavy. I quickly asked for an information pack and devoured the forums. I also made some calls and quickly concluded the level of knowledge about TTTS on the island was very low. We contacted some doctors in the US. Dr.. Delia got on the phone with my wife and comforted her a bit. He had developed a revolutionary surgery that ha reasonable success on correcting the condition, he also advised lots of rest and upping the intake of protein (Boost shakes and things like that). We also found another doctor, closer to home, in Florida who had taken the TTTS surgery and refined it further. We got an appointment.

Our search for a local doctor that could help us brought us toa doctor that knew of the condition and was sympathetic to our plight. With some improvisation and ingenuity because he didn't have the correct equipment he helped prepare my wife for traveling.

So July 3 2004 we traveled to Florida. We were very worried. Our hopes for our children were in the hands of an experimental surgery. We understood the odds were against us but we had no choice. Every parent who reads this will relate. Parents will stop at nothing for their children. The doctors had taken to call our children Fetus A and Fetus B. I dunno if it was rebelliousness or what but we decided to name our children and insisted everyone called them by their names; Jesus and Gustavo. We decided on the names quickly, they felt right, we looked at a sonogram and it was, well thats Jesus and thats Gustavo.

When we got to the hospital, they didn't waste any time, in under 3 hours the doctor had done a battery of tests. He didn't mince words. TTTS had progressed rapidly, it was at stage 3 and both babies were suffering. Jesus was really small and had almost no amnio fluid. Gustavo had an enlarged heart, problems with the skin and a few other scary sounding conditions. The operation was scheduled for July 5. I was with my wife until they took her to surgery, I kissed her belly and her lips and walked with them to the surgery area. When they closed the door I just fell on the floor crying. I had never felt so helpless and useless in my life. One of my wife's sisters traveled with us, she tried comforting me but I just wanted to be alone for a while.

About 90 minutes later, the doc came out. The operation had went well. Both babies were critical but now they had a chance. I kissed my wife. The operation had been filmed for the Discovery channel and my wife had been awake the whole time looking at everything in a monitor. They also gave us a few color stills from inside. The babies looked beautiful. We had to stay in Florida a few days for follow up checkups. At one of the checkups, July 7, the doctor told us that Jesus' mission on this planet had been completed. He hung in there for as long as he could but he couldn't make it. If he had died before the operation, there was a good chance, Gustavo would have died too due to the way they were both connected (see the links for more info on TTTS). I think he hung in there for as long as he could to give his bro a chance. Looking at sonograms after that was really hard, my wife would have to carry both babies to term. The hospital staff was very supportive. Some Puertorrican nurses had been checking in on us since we arrived and they all shared our grief.

Eventually we came back to Puerto Rico with a referral to a doc who could take care of my wife till she gave birth. We both went back to work. My wife had to be checked at least weekly. We quickly settled into a routine. After about 6 weeks my wife started having contractions so the doctor advised bedrest. Fortunately the laptop and Gameboy provided some mental activity for her. After a few weeks, my wife had some more complications and she had to be hospitalized. Eventually the placenta started bleeding and an emergency C-Section had to be performed. I quickly rushed to the hospital. Gustavo was born a bit after 3:00am. We had signed up for follow up and research at the Florida Hospital and they had sent us some protocols and study requests to be performed at birth. I took care of all that and said my final goodbyes to Jesus.

Gustavo stayed 33 days at NICU and was finally released when he weighted 4 pounds. He has fully recovered, even from a heart murmur that he developed.

TTTS is a condition that happens in pregnancies of multiple babies. Without treatment the babies have no chance of survival. The best source of information about the condition is www.tttsfoundation.org, 1-800-815-9211. All multiple pregnancies are high risk, if you know someone who is pregnant with twins, please refer to them the website. We also created a Facebook Group that is now almost 300 strong where people have been sharing stories and support. There is still a shameful lack of knowledge about the condition. My wife and I have both shared our story in different places, Teleonce even gave us 2 minutes once. If you know someone pregnant with twins, please talk to them about this. If you are a woman, please give the link to you gynecologist.