To say that we have had an emotional week would be the understatement of the decade.
Patrick and I had an appointment last Wednesday, the 9th, to see our twins for the first time since my 9 week ultrasound, pictured in the last post. We knew we were having identical twins and couldn't wait to find out if we were adding two little girls or two little boys to our family. What we learned from the ultrasound, however, would change our lives.
The twins looked beautiful to me. Both were moving around and it looked at one point like they were facing each other, each with their arms reaching out to the other. The technician was kind, but a bit tight-lipped, skirting around some questions I had and spending a lot of time looking at "Twin A's" heart in particular. When she spent significantly less time on "Twin B," I became suspicious that something might be wrong. The doctor came in shortly after and told us that our babies were very sick and in danger. They needed immediate intervention if they were to have any hope of survival. He diagnosed us with something called Twin to Twin Transfusion Syndrome (TTTS), and said he would like us to be seen at Children's Hospital of Philadelphia as quickly as possible.
TTTS occurs when there are abnormal, unbalanced vascular connections between twins who share a placenta. The arteries of one twin (the "donor") pump into the veins of the other (the "recipient") and both twins are in danger. What I experienced physically was a huge increase in the size of my uterus over a short period of time that I did not know was not normal for twins. I was very large and very uncomfortable. This happens when, in an effort to process all the extra blood, the recipient urinates much more frequently than normal and makes excess amniotic fluid. The donor twin, however, had very little fluid and was sort of "stuck" to the side of my uterus. She did, however, have a visible bladder, which was a good sign.
Patrick and I spent a lot of time crying and went home feeling a little numb. I was sad that we came away from the appointment learning about this terrible syndrome and yet still not knowing whether the babies were girls or boys. We also had no ultrasound photos of our babies. It was a very empty feeling. I called the doctor the next day and asked him if he was able to see the gender of the babies, and he told us they were girls. It felt good to learn that and we tried optimistically to imagine our family with two little girls in it.
We reached out to the
TTTS Foundation, letting them know what we learned and asking for information and help. Mary, the founder, was wonderful and supportive and called to answer our questions and to offer us hope. She suggested I remain on bedrest until our appointment at CHOP on the following Monday and mentioned to be aware of an even greater increase in fluid. She also suggested that we name our babies so that we didn't have to just keep referring to them as "donor" and "recipient" or "Baby A" and "Baby B." We decided to name our donor baby Fiona, which means "fair," and our recipient baby Brigid, which means "strong."
Friday night into Saturday, I felt the increase in fluid that Mary was referring to. I had much more pressure under my right rib, felt a little lightheaded, and was really having a hard time breathing. I knew I'd been having some anxiety attacks from the upset of our diagnosis, but this was something more. On Saturday morning, we decided it was best to go into the hospital. Unfortunately, this was also the day of my little sister's wedding. My parents came to get the boys to bring them to the wedding and Patrick and I went into the hospital.
I was seen by the OB on call and we learned that our perinatologist was in his office and would be able to do an ultrasound to see what had changed since Wednesday. What he saw was actually an improvement. Our donor twin appeared to be moving around more and to have some more fluid in her amniotic sac. This was encouraging, but because she was moving more, he was also able to see her umbilical cord better and to determine that it looked rather fragile. It was a velamentous insertion into the placenta, which means that rather than inserting directly into the mass of the placenta, the vascular connections of the cord extended off the very edge of the placenta and went along the surface of the sac's membrane before connecting to the baby. This could be contributing to baby Fiona's poor growth, as she was much smaller than her twin sister.
We went home slightly more hopeful and anxious for our appointment at CHOP, where we could get a better idea of what we were up against and determine a plan of action.
Monday's appointment at CHOP consisted of hours of testing. Ultrasound echocardiograms for the babies, genetic counseling, more anatomical ultrasounds and finally a consultation with the doctor. We could see that little Fiona had no more fluid around her and her bladder was no longer visible. It was evident that her heart was struggling from the syndrome, as was Brigid's, which was overworked and straining. The tests were overwhelming and exhausting, but the staff and technicians were all very sympathetic and encouraging to us. One even printed out some photos of the two girls for us, which were both sad and beautiful. I put them in a folder and have not been able to look at them since. Seeing those babies struggling in there and just wanting to reach in and help them or hold them was so frustrating and upsetting.
During our consultation with the doctor at the end of the day, we learned that not only did we have TTTS, but that it was complicated by something called Intrauterine Growth Restriction (IUGR), which is what happens when a baby has only a small portion of the placenta, as our little Fiona did. The doctor suggested that she actually only had less than 10% and that she was already showing indications of brain damage as a result of the lack of blood supply. He told us what our options were: we could do nothing, in which case our babies had less than a 5% chance of survival; we could terminate the pregnancy altogether, which was not an option for us; we could "selectively terminate" Fiona since she was already so severely damaged, giving Brigid a better chance at survival, which was also not an option; or we could have a surgery to stop the abnormal blood flow between the two babies. This surgery was going to be the best chance at saving both of them, and for us, it was the only option. The doctor said he'd like to do the surgery the next day because of the urgency of the situation, and told us that if Fiona did not survive until then, not only could they not do the surgery, but it was likely that Brigid would die as well. If Fiona survived and if the surgery was able to help her, he warned us that she would likely be born with severe neurological problems, including cerebral palsy or worse.
That was one of the most difficult nights of my life.
Sleep did not come easily. I prayed for my babies. I prayed for the doctors. I prayed that Fiona would survive until the surgery and even beyond the surgery. I slept fitfully and woke very early in hopes of feeling some kicks that would give me an indication that the babies made it through the night. Once I did, I prayed they could hold on for a few more hours until the surgery.
We returned to CHOP and they got me ready for the surgery. Just before I went to the OR, they did one last ultrasound to determine that both babies had indeed made it through the night, and they had! The procedure is an amazing one: the doctors insert a 4mm wide instrument into the uterus that has both a camera and a laser on it. They map out all of the connections between the babies on the surface of the placenta and determine which ones are the unbalanced (vein to artery) ones. Then they use the laser to cauterize all of these connections to ensure that each baby is only getting her own flow of blood to and from the placenta. I was only under a twilight sedation, so I did have some awareness of what was happening, but I didn't really feel any pain, just some discomfort. After the surgery, they also took out some of the excess amniotic fluid from Brigid's sac. They removed 2.5 liters and my stomach was half its size! It was remarkably quick - only about an hour and a half - and the doctors were so encouraging and compassionate. I went back to my room and slept for most of the afternoon. They kept me overnight and would do another ultrasound after 24 hours to see how the babies were responding.
The time went slowly and, knowing the babies experienced the same sedation I did, I didn't feel many kicks to let me know they were okay. It was frightening and yet we felt a peace, knowing that we did everything that we possibly could do and the rest was in God's hands. We knew he loved our babies even more than we did. For a few minutes, I closed my eyes and I had a vision of Jesus welcoming our little Fiona into heaven, and then the technician came in to do an ultrasound.
I watched the technician's face, looking for any sign of what she was seeing on the screen, but couldn't tell. Then she went to get the doctor and his face was a little easier to read. He seemed encouraged and then dismayed. "Did we lose the donor," I asked. "Yes," he said, compassionately. He showed me the screen and told me that Brigid looked to be showing some improvement already, but he also showed me that little Fiona's heart was no longer beating. The range of emotions was difficult to process. Sorrow over the loss of our little one, thankfulness that she was able to hold on until the surgery, encouragement that Brigid seemed to be doing better, fear that there was a chance that we could still lose Brigid in the days and weeks to come. Patrick and I held each other and cried. It was so terribly bittersweet. I asked the doctor what would happen to Fiona, and he said that she will just stay until Brigid is ready to be born. Thinking about what
that day will be like is terribly overwhelming and for now, I try not to.
I had to stay in the hospital for a little longer to finish my dosing of post-surgery antibiotics, and then we went home. I am on fairly strict bed rest now (only up to use the bathroom and shower), hoping and praying that our little Brigid gets stronger. Having our boys here is like medicine for our aching hearts. We have been so overwhelmed by the outpouring of love and support from our friends - offering childcare, bringing meals, helping with groceries. It is very hard for my Type A controlling personality to sit on the couch and watch others run the house or to delegate to people who are here and asking how they can help, but I think I'm going to have to get better at it for at least the next two or three weeks.
The whole experience has been surreal. We were not trying to have another baby right now, but we learned that we were. Then we learned that we were having twins. We learned they were identical and that felt special. Identical twins is something that happens to other people, not to me, but here we were. Then we learned that we had this syndrome and I was going to have in utero surgery and that, too, seemed surreal. Losing a twin makes it feel like that specialness has been taken away. The dressing them alike, comments from strangers - all that has been taken away and it feels like a void even though they haven't even been born yet. It's only the second time I get to use the "twins" tag on a blog post, and yet, it's the last.
I will be going back to CHOP on Tuesday for a follow-up appointment and to determine how well Brigid is improving. Knowing that she has almost the entire placenta is both sad and encouraging. Having to tell the boys what happened was very difficult, and I knew Jack would take it very hard. He was so excited about having twins, and he was especially thrilled to learn that they were girls. His innocent questions have been so hard to answer, and he is acting out in a way that shows he is still having a hard time processing everything.
I'm praying that God will heal Jack's little heart. I'm praying that Patrick will have the patience and stamina to do his work and to take on more of the housekeeping and childcare as well. I'm praying that little Brigid's heart would continue to show improvement and that she would grow strong and healthy enough for a full term pregnancy. And I'm praying that our hearts would heal as well and that our faith would be strengthened. We feel the sting of our loss but are trying to stay positive and encouraged by Brigid's improvement, trusting that her future rests in God's hands as well.
It's hard not to dwell on the what ifs. What if we had caught the TTTS sooner? What if we go on to lose Brigid too? We are hopeful. We are prayerful. We are anxious. But we know that God is sovereign and He is good, and His ways are not our ways. We are also encouraged to trust that one day, we will get to meet our little Fiona in heaven - and so will her twin sister and her big brothers.
There's our beautiful baby girl.
