TTTS Parent Stories: Ben & Sam Surviving Miracles
In December 1998, I throw out my birth control pills. In March 1999, we start trying to have a baby the old fashion way then by using the thermometer to track my ovulation, monthly ovulation kits, etc. We tried for a while. No luck. In June 2000, Mike has a varicocelle surgery in order to improve our chances of conceiving. If you don’t know too much about this, you can look it up on the web. It is pretty painful. No luck. In January 2001, we do our first artificial insemination unmedicated. We do a total of four of them from January until April 2001. However, you also have to go through the humiliating tests like the hysteroscopy (camera in your uterus) and hysterosalpinogram (dye through your tubes). No noted problems were found. In May 2001, we have our first IVF round. We harvest seven eggs, six fertilize, two left on day of transfer. No success. No embryos left over to freeze. In August 2001, we have our second IVF round. We harvest 13 eggs, 11 fertilize, six left on day of transfer, three put back, but none of the rest make it to blastocyst phase so none left over to freeze. We finally achieve a pregnancy. The only pregnancy I have ever had in 32 years! It was actually possible. My worries should be over. Go figure, we do IVF and get identical twins!
The pregnancy was, I guess, normal in the beginning. I knew I was having twins very early, around 8 weeks. I thought my stomach was getting big early, but what do I know? When the sonographer said I see one fetal sac, we were surprised, but when he said there were two hearts beating within the one sac, we cried for joy.
At Week 12, we saw them move. That was wild. We let my mom come into the room to watch the screen. At Week 16, we found out we were having boys, and named them, Benjamin John (baby A) and Samuel James (baby B).
At Week 20, our world came crashing down. I had only read briefly about TTTS prior to that appointment. The disease is a monster. Our perinatologists told us that the fluid difference was great, but that Sam had just enough fluid to move, and his bladder was visible, but Ben had too much fluid. They wanted to see us in three days to confirm a diagnosis. When we went back, they confirmed TTTS, and told us we would need an ultrasound twice a week. Both heartbeats were in normal range and Ben and Sam were about the same size. We emailed two doctors, Children’s Hospital of Philadelphia (CHOP) and Dr. Quintero in Tampa, FL who perform the laser surgery on the placenta to find out more information.
At Week 21, I was measuring 33 weeks. On December 18, 2001, the peri sent me home with no amnio reduction. Ben’s biggest pocket of fluid was 13.9cm. Later that evening I had a regular appointment with my OB, who put me on bedrest. Heartbeats were both in normal range, but Sam had a hard time stretching his legs out. That’s when I found many other people suffering through TTTS. Two days later, on December 20, 2001, I could barely breathe because my stomach was so big. We called the peris and insisted on an appointment. Once there, they said they would do a reduction. Ben’s biggest pocket of fluid was 17cm. They removed two liters in the office. A septostomy occurred during the procedure. They didn’t monitor my contractions, no antibiotics, and basically made me get up off the table within ten minutes after the procedure. My legs shook uncontrollably for about fifteen minutes; I was nauseous, had trouble breathing and was really crampy. I was so scared my water was going to break.
On December 22, we decide to DRIVE to Tampa, about 1,000 miles from Philadelphia. We didn’t get a positive response from CHOP. They seemed like they didn’t want to be bothered, and wouldn’t give us an appointment for about a week. Dr. Quintero and his assistant, Mary, really cared about us, called our insurance company, and prepared for our arrival. On December 24, after two doctor’s appointments in the morning in Pennsylvania, we start our drive. Sam has more fluid now from the septostomy, but Ben is making too much fluid. Both heart rates are the same and normal. The largest size difference between the boys was 21%.
On December 26, we had our appointment with Dr. Quintero and my second amnio reduction at Week 22. Dr. Quintero said that we are only in Stage 1 of the disease, cord blood flow is normal, and no laser surgery is recommended. He removes 1.4 liters of fluid. He would have like to have taken off more fluid, but the babies kept getting in the way. In Tampa, I was admitted into the hospital for a few hours during the amnio reduction, contractions were monitored during the procedure, given antibiotics to fight infection, and given morphine to relax. What a difference.
On December 31, 2001, we arrive back in Pennsylvania just in time for our peri appointment. Ben’s largest pocket was 12cm. I get my third amnio reduction in which another 1.4 liters are removed. Four days later, at Week 23, my stomach was only measuring at 28 Weeks. The fluid seemed to have slowed down.
From Week 20 until Week 29, I had two peri appointments with ultrasound including fluid and cord blood measurements and one regular OB appointments each week. Starting at Week 30, I had one peri appointment with complete ultrasound, fluid and cord blood measurements, one non-stress test appointment which also included a fluid measurement, and one regular OB appointment each week.
A miracle occurred that New Year’s Eve. After my third reduction, the fluid stabilized. I don’t know why. I never needed another reduction. I stayed on bedrest from Week 20 until the end of the pregnancy. Other than going to my three doctor’s appointments (my husband or parents drove me), I just laid in bed, got up long enough to take a quick shower, bathroom, and making myself a can of soup or something, I took it EASY! I drank 1-2 high protein Ensures a day, and I limited my total fluid intake to one gallon per day. I was always so thirsty and had a tendency to drink tons of water. I don’t know if that helped.
I started have contractions the day I turned 35 weeks. I had contractions (that weren’t painful) for about two days. I went to the hospital around 1pm on March 30, 2002, they broke my water at 4pm, and I was fully dilated by 7pm. Ben and Sam were born at 9:39 and 9:47pm through a regular birth that night. Ben was 6 lbs 1 oz and Sam was 5 lbs 8 ozs. Sam stayed in the NICU due to his inability to regulate his blood sugar, and Ben stayed in the well nursery. Ben and I were discharged three days later, and Sam stayed one extra day in the hospital.
Ben and Sam are now 13 months old. I STILL can’t believe that we made babies, I delivered them, and there are two other people living in my house. I am so grateful and humble that God allowed me to be a parent. We are not going to try for anymore children. Pregnancy for me was a nervous and fearful time. I cannot ask or hope for anything more. I have an infertility journal as well as a pregnancy journal. Ben and Sam will, one day, know how hard we fought to put them on this earth, and above all, we will teach them how precious life is.
Cindy and Mike Wesley
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