My wife Jen and I have become parents to 2 wonderful TTTS survivors, Evan and Joshua born at 32 weeks on 11/06/02.
Our TTTS story started in July of 2002. Jen had become pregnant at age 39. Me at 47, and our kids at 17 and 14 had some re-adjusting to do. Wow! At the time we were beside ourselves with hope and joy. Jen’s morning sickness was stronger and lasted longer than she remembered. She was also amazed at how large she had become. At week 15 she demanded that her OB/GYN send her to someone with an ultrasound. She returned home with the news that it was twins.
She explained that the Dr. had discovered a problem and mentioned the possibility of TTTS. After a research session with the internet I knew we were faced with something big. I remember the sit down session with the doctor and how the hairs raised on the back of my neck as he recited dire statistics. There was an 80 % chance these 2 little ones would never make it, and a 65% chance that only one baby would make it. He mentioned that an NIH sponsored TTTS Trial was being conducted by Children’s and suggested that we go there.
We had our first visit at Children’s with Dr. Johnson and Dr. Crombleholme during the first week of August at week 19-20. The Doctors were well versed in handling TTTS and they immediately established a rapport with us both. The ground rules for Trial involved randomization of Treatment. With much trepidation we elected to throw the dice and fell into the AR treatment portion of the study. The schedule as outlined to us was to be 3 days a week: Monday Wednesday and Friday. I think back to that time and remember how each session was a reaffirmation that our twins were still living. Some days were worse than others. As Jens pregnancy progressed the AR’s became harder. Jen and I were both concerned and happy as we sat in the fetal surgery waiting area on Sept 13, 2002. We were happy because we were a weekend away from making week 24. Our twins had been doing well but now things looked poised to start going in the wrong direction. Reverse flow in the venous spinosa, fluid around both of our twins’ hearts and the hint of ascites in our recipient’s abdomen.
The following week was a blur. All tests seem to indicate that things were not getting any better. Treatment failure was declared that Wednesday and surgical options were discussed the next day. Our day in the OR came. I was advised that Jen was in surgery and things were going well. Dr. Cromblehom used a laser to create 5, 600 micron holes between the amniotic sacs The encouraging thing is that the chord dopplers were now normal. Amniotic fluid levels were also within the normal range as well. Jen’s recovery at Univ. of Pennsylvania Hospital (HUP) took 4-5 days. Dr. Johnson was very quietly amazed over the effect the Septosmy had for Jen and our twins. “We are seeing very dramatic results and I am totally shocked.” It was only 1 day after the surgery.
Jen and I counted our blessings and celebrated the passing of each week. The docs had given us only a 30% chance that a Septostomy would do anything for us. We were fortunate to fall into that 30% group. Week 28 came and Jen and I had a personal celebration. Both twins were doing well and gaining weight. Our donor twin was starting to catch up. Week 30 came and Jen received her steriod shots to promote lung development in our twins. We made it to 32 and decided to proceed with C-section. The conclusions of the doctors were: not to allow TTTS a chance at claiming them. Survivability between a 32 week and 34 week baby is not much different. Joshua who was head down came out first. Evan, who was breech came out second. Josh’s weight was 4lbs 13 oz and Evan’s weight was 3 lbs 11oz. Josh did very well but Evan was not able to breath on his own and needed to be intubated. Evan would go on to recover. He battled infections, being re-intubated, a spinal tap, tachapnea and problems with gaining weight and finally an inguinal hernia operation. After 85 days in the NICU he came home to us January 30th 2003. At the time of this writing (04-20-03) Evan is almost 12 pounds and developing good eye hand coordination. His brother Josh is almost 16 pounds and doing about the same sort of things.
In summary, this story is one of hope. Each of us will have to find our own Joshua and Evan. In my opinion the right answer is still elusive and may not be found for some time yet. Proper diagnosis and constant monitoring are crucial. Each TTTS story seems to have much variety with different outcomes. I think much remains to be discovered about this syndrome. We have to be ready to accept 1, 2 or no babies for our efforts, not to mention long term special needs that any one of them could face.
Best Regards and Hope,
William & Jen Ridgeway