This week Shann tells the story of her boys’ Penn and Cruz and their journey through Twin to Twin Transfusion Syndrome. It’s always strange reading these stories because sometimes they can be so similar. Like when Shann talks about her experience of being on continuous monitoring in the hospital, and how once a nurse had to sit with her for three hours while trying to find the heartbeats. That happened to me several times.
At any rate, Shann has two healthy baby boys now, but their journey to get there was not an easy one.
Penn and Cruz: Written by their mother, Shann
I’ve been wanting to tell the story of my pregnancy for some time now. Not only is it hard to find time, but anytime I do have, I try to grab a nap. Raising 3 kids under 3 is hard! Plus, I don’t know that I’m ready to relive all the emotions of my pregnancy. It was really one of the hardest things I’ve had to go through in my life.
While the 3 months in the NICU were extremely difficult, I had wonderful nurses and doctors to help in the twins’ care. When I was pregnant, I felt like I was the only one responsible for them. I know the doctors were monitoring me and my family helped me make decisions, but ultimately, the babies were in my body and it felt like every decision I made could have been life or death for one or both of the babies. It was a really heavy emotional time for me.
So, I am going to tell a shorter version of my pregnancy, and not go week by week, as I hope to eventually do. Someday I will have the strength to share everything, but for now, here are the basics.
Last fall, I was having some health issues having to do with my bladder and kidneys. The issues have since resolved themselves, but at the time it was very stressful going through a bunch of tests and constantly taking antibiotics. I saw countless doctors and specialist and no one could figure out exactly why I kept getting infections. Then, at the beginning of December, I found out I was pregnant. I got extreme morning (rather all day) sickness, and had to leave my job. I didn’t tell anyone I was pregnant because I am very superstitious about not telling anyone until after the first trimester is over. Well, we planned to tell everyone after our 12 week ultrasound, but we got bad news. The nuchal fold on one of the babies (yes I said one of the babies….we found out it was twins…that was awesome news!) was enlarged.
Because they were identical and sharing a placenta, this enlargement could have indicated a chromosomal abnormality in both babies. We were rushed to Froedert for a CVS (where they take a needle and get a sample from the placenta) to find out what we were dealing with. After almost 2 weeks, we got the call that everything was ok and breathed a huge sigh of relief.
Unfortunately, this was only the beginning. At the next ultrasound, it was discovered the babies were over 20% discordant in size. When twins share a placenta, this is indicative of either unequal placental share or TTTS (twin to twin transfusion syndrome) Both are very dangerous, and the survival rates of both babies are not very encouraging. Basically, when it is unequal placental share, one baby will eventually run out of placenta, and thus nutrients, and have to be delivered because there is no treatment. Babies are only considered viable at 24 weeks, and a full term pregnancy is 40 weeks. In TTTS, because of the shared connections in the placenta, one baby takes the nutrients from the other, and therefore the blood. One baby’s heart will then have to work very hard to pump all the extra blood and the other will start losing functions of its organs, starting with its bladder.
There is a laser surgery that can be performed for TTTS, but you must meet certain criteria, such as a large enough amounts of amniotic fluid, and it is still very dangerous to the babies. The goal of the surgery is to separate the connection between the babies because if one should pass, the other one would get a sudden rush of blood, which can result in brain damage or death. So, throughout my entire pregnancy, I was monitored for either/both of these conditions. I had weekly, sometimes bi-weekly ultrasounds. I also changed my care from the original Maternal Fetal Specialist at Waukesha to a specialist at St. Joe’s.
Dr. Julian De Lia was the pioneer of TTTS laser surgery, and we are lucky enough to have him in Milwaukee. He is truly an amazing man, coming to every single ultrasound, even though he was technically on sabbatical. Not only did I make the decision to be in his care because of his expertise, but because the other doctor told me I should consider cord ligation. Cord ligation is basically clamping the cord of the smaller baby in order to save the bigger baby. He did not believe my smaller baby would make it to viability, and even if he did, he didn’t believe he would be big enough to save, which he considered 500 grams, or a little over a pound.
I couldn’t bring myself to pick to save one baby over the other, so I had to find a doctor that would support my decision. Dr. De Lia was that doctor. Every week, from week 16 of my pregnancy, I would head to St. Joe’s for an ultrasound. This was the only place I would go, as I was on bed rest. I also had to force myself to drink three high protein Ensure shakes a day, plus try to get as much protein from other foods as possible. I was still nauseous, and food had absolutely no appeal, but I ate for my babies. It was one of the only things I could do. I even put an Ensure in a cooler in the bathroom, so every time I got up to pee, I would sip some of it.
Bed rest was sheer torture. I would lay on the couch at my Mom’s house unable to take care of my other child, Bex. I was completely dependent on my parents and my husband. I felt like such a burden. I also was emotionally drained. Since I couldn’t really do anything but watch TV or go on the computer, I sat all day worrying about my babies and how this was affecting everyone in my life. It was taking an emotional toll on everyone I loved. It’s really hard to be responsible for the pain you see in your loved one’s faces. My blood pressure was so high at the beginning of each visit from my stress level that they would have to retake it after the scan. The ultrasounds looked to see what the fluid difference was between the babies, the weight difference, and they also looked at how the blood was flowing from the placenta. They needed to make sure both babies were growing and that there was some good blood flow. The smaller baby had a bad cord insertion, so he did not receive as many nutrients and therefore grew at a much slower rate. The blood did not always flow forward, but it would stop, and sometimes reverse, which they call absent end diastolic flow and intermittent reverse flow.
They also guessed that since my fluids were in the very ends of the normal range, there was a mild transfusion and that they had a very unequal share of the placenta. So my babies were fighting both conditions, TTTS and SIUGR. By week 21, I could start to feel them moving around. In some ways it was good, in some ways it was terrifying. I was always afraid I could only feel one baby moving, and that we would show up at the next ultrasound to only one heartbeat.
By some miracle, I made it to 24 weeks. At that appointment, I asked the doctor if I should stay in the hospital for constant monitoring. He hesitated, but then agreed. Even though I had been on bed rest at home, the hospital was a whole new level of torture. I missed my 2 year old terribly and also felt so guilty for everyone else having to take care of him. I had never been away from my son for even a night before this experience. In addition to that, the more pressing concern was for the babies. They would hook up monitors to find the heartbeats three times a day at the beginning. Because the babies were so small, it was hard to find them, and even once they did, they rarely stayed still. One night a nurse sat pressing the monitors on my belly for over three hours. Eventually, they went to constant monitoring, which was so uncomfortable, but I wanted to do whatever I could to save both my babies.
On the morning of Friday, May 4th, around 5:45, I was alone in my room. I started to drift to sleep, but I heard the slow beeping of the monitor. Even though the monitor also monitored my heart, I knew it was too slow to be me. I called the nurses, and sure enough, baby A’s heart was decelerating. It had been beating very slowly for 5 minutes, indicating he was in distress. Three nurses rushed in, followed by the Doctor on call. They turned me to my side and gave me oxygen. The Doctor brought the ultrasound machine and asked me, “Are you ok with letting me take the babies out if I see them in distress?” I, of course, agreed to do what was best for them. He looked quickly at the ultrasound and shouted to book the Operating Room.
I was extremely frightened. I’d never had major surgery before, and had a natural birth with Bex. I wanted to call my husband and mom, but there was not time. They rushed me into the room, took off my pants and rolled me onto the table. They inserted a catheter, and then the anesthesiologist came over. I reminded the nurse to tell everyone that the babies shared a placenta, so they may need blood volume after delivery. Dr. DeLia, my doctor, had reminded me to do that because in this kind of pregnancy complications can arise at the last minute. After the nurse told everyone, I remember the anesthesiologist telling everyone to be quiet because I wasn’t out yet.
I remember praying that I wouldn’t feel them cut me open and that my babies would both be alive. The next thing I remember is coughing and being rolled into the recovery room. My mom was there and then Andy was there shortly. The nurse told me both babies were ok and in the NICU. After a few minutes, they were able to roll me into the NICU to see them. I remember my mom being teary eyed and saying how perfect they were. My dad and brother also came and got to see the boys. I just felt a great relief that they were both ok and that the pregnancy was finally over.
My twin boys were born by emergency c-section at 9:49am on Friday, May 4th, 2012. At just 25 weeks and 5 days, Baby A weighed 1lb and 7.5oz and Baby B weighed 2lbs and 2oz. After examination of the placenta, it was found that there were 4 connections between the babies. Baby B had about 10% of the placenta, and his cord was hanging out into the membrane, not connected directly to the placenta. We were lucky we delivered when we did. My boys spent 91 and 93 days in the NICU and went through many complications, but I am happy to say they are now home and doing well. They are currently 18 months and weigh over 21 and 26lbs.