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Hayden and Connor's TTTS story by Lindsay Castiglione



A friend of mine, Lindsay Castiglione, posted this as a Facebook note August 4th, 2011, after a harrowing pregnancy. Her identical twin boys were diagnosed with Twin to Twin Transfusion Syndrome (TTTS) at 16-weeks and were brought into the world at 30-weeks via an emergency C-section June 16th, 2011. They spent 46 days in a NICU 45-minutes away from Charlie and Lindsay's home. Recently, Hayden and Connor celebrated their first birthday! I would also like to add that Lindsay exclusively breastfed and pumped for her boys their entire first year. Amazing!

Since posting this "note," Lindsay has been asked repeatedly to blog about her experience with TTTS. I am so excited to finally share her story with you, with Lindsay's permission, of course. Thank you for sharing your story, Lindsay!

-Kimber

(For more information on the differences between identical and fraternal twins, check out my blog post "Identical or fraternal.")





A year ago I would have told you my greatest fear was that I’d never be a mother. I’d known since before meeting Charlie that I had some issues that would make it necessary to use fertility treatments to become pregnant. We were very fortunate that on the first try of IVF after moving to New York, we were successful. Charlie and I were ecstatic, and even more so when we found out we were having identical twins. Little did I know that my fear of never becoming a mother wouldn’t necessarily go away once I was pregnant and got past the first trimester. It was replaced by an even deeper, more paralyzing fear when we were faced with a complication that could very well take both of their lives before they were born. This is our story of Hayden and Connors’ battle with Twin to Twin Transfusion.


It all begins in such a simple and basic way; we wanted have a baby...or two, as we were really hoping for twins. On December 12, 2010, we found out that we would have our chance at it. We had several early ultrasounds after finding out we were expecting, and at week 7 we learned we’d be having identical twins when we saw two tiny heartbeats inside one gestational sac. We were so incredibly excited about this - having identical twins felt so special to us. My due date was August 22nd, incredibly the one-year anniversary of my mother-in-law Linda’s passing. We knew since twins are born earlier than 40-weeks we wouldn’t really be having them on that day, but it still felt significant to share that date with her. I took it as a sign that she’d be watching over us and would help keep the babies safe.

In the beginning I didn’t know anything about the risks involved with the type of twins that were growing inside me; they are monochorionic (one placenta), but diamniotic - two amniotic sacs inside one larger one, and the babies are separated by a whisper-thin membrane giving them each their own fluid. The first trimester was scary as it is pretty much for any woman; it is the time frame where anything can happen and disrupt the pregnancy. Around week 13, we had some testing done that thankfully showed the babies to be at very low risk for chromosomal abnormalities. The ultrasound tech also noted the thin membrane separating the babies; this was significant as it ruled out them being monochorionic, monoamniotic twins, a very rare and dangerous type of twinning that has a high fatality rate. The babies don’t have any separating membrane in this type, and cord entanglement is a very real possibility. Everything was looking great at this point and I was starting to let myself believe that I would really get to be a mother after all.

After making it to week 15, the nausea and exhaustion finally started to fade, and I started to relax even more. Then, during an ultrasound at our OB, the technician (one that I hadn’t had before) could not find the membrane between the babies. I told her we had seen it before, but she argued and said she did this all the time - if it were there she’d see it. A few minutes later I saw one of the doctors from the practice, and he wasn’t concerned at all. He said with how hard the membrane is to see, she probably just missed it. The next week, I had another appointment with a different doctor at the practice. He had read in the notes that there was no membrane visualized and wanted to do his own ultrasound to check. He could not find it either, and told us he thought the babies were in fact monochorionic, monoamniotic twins. The office scheduled me an appointment with the high-risk Maternal-Fetal Medicine unit at the hospital for 4 days later. I went home and of course, googled mono/mono twins, and terrifying statistics popped up. I spent the next 4 days worrying that we would have very premature babies, if they even made it at all, and prayed that they had just missed the membrane on the ultrasounds.

Waiting the four days until our appointment was tough, it seemed like forever. We were brought into an ultrasound room, and in comes Dr. M with not even an introduction. He just went right to work scanning the babies, starting with baby A. We knew the babies were boys at this point, and he confirmed that. He kept saying how healthy A looked, how “happy” he was. Then he got to Baby B, and became very quiet. He was having a hard time getting measurements on him, I asked if I could move any way to help, to which he quickly told me no, it wouldn’t change anything. After about 40 minutes, I dared ask if he saw the membrane. He distractedly said yes, there was a membrane. I let out a huge sigh of relief and squeezed Charlie’s hand. In the next breath he told us that was not the problem, and that the babies had Twin-to-Twin Transfusion. The reason they couldn’t see the membrane at the last ultrasound was because it is shrink-wrapped around Baby B. He went on to show us how the only way you could see the membrane was to look between the baby’s chin and chest. Baby B had almost no fluid, and Baby A had too much. Dr. M explained their shared placenta was routing all the nutrients, fluid and blood flow to Baby A, leaving Baby B with almost nothing. Baby A was the “recipient”, and Baby B the “donor”. I asked what we could do about it, anxious for his answer but at the same time terrified to know what he’d say. He bluntly told us surgery to disconnect the blood vessels in the placenta between the babies would be our only option at saving them. If we did nothing, the mortality rate was over 90% for a case as severe and as early diagnosed as mine. With surgery we’d have a 60% chance of them both being born and living, and a higher rate, about 80% for at least one baby making it. Even though Baby A had plenty of the resources, it would stress his heart sooner than later and put him in heart failure. Baby B would end up malnourished and anemic, and his organs would also start failing. I was sixteen weeks and four days pregnant. We had no choice but to try and process everything they were telling us, and do whatever we could to save our babies.

The wind was knocked out of me, and my head swam with statistics and gut-wrenching fear. You know that feeling of the bottom dropping out from underneath your world? Where you think “This changes everything forever. Nothing will ever be the same.” These were understatements compared to what I was experiencing. It was absolutely, positively terrifying. We had spent all the savings we could part with to get pregnant with these babies - if the worst happened and we lost the babies, it could be many years or even never before I got pregnant again. It was horrible to even think of money at a time like this, but I was so afraid my chance at motherhood was being ripped away from me. The financial piece was, unfortunately, a factor.



I went in the bathroom and cried for a few minutes, but wanted to get back to Charlie who was waiting in an empty office. The nursing staff was scrambling to get in contact with the fetal surgeons at the Children’s Hospital of Philadelphia to see when they could get me in for surgery. There are only a handful of hospitals in the U.S. that perform the surgery, and very few that have the kind of experience and reputation to be leaders in the field of TTTS treatment. CHOP was one of them, and, at a 5-hour drive, away it was a good option for us. All of my records and ultrasound images were faxed to them so they could evaluate the severity of things, then they would schedule an evaluation and surgery based on their feelings of how urgent this was. We left the office with a promise we’d hear from CHOP within a few hours. I was scared and emotional, but still held hope in my heart that they could help our babies. Less than an hour later I got a call from the fetal surgery team’s secretary. They wanted me to wait two weeks (‘TWO WEEKS!!’ I thought. ‘How can they wait that long to help my babies?’) and for me to be monitored twice a week in the meantime by Dr. M to make sure the syndrome didn’t progress rapidly. The woman explained to me that if they did do the surgery when we were there, waiting until the 18th week was optimal over rushing into it now. She said according to what they were seeing from the images sent to them, I was at stage I, but that I was so early in the pregnancy we still had to take it very seriously. The reality was that very few women diagnosed this early in their pregnancy get to take home their babies. I still had months to go before the babies were considered ‘viable’, or able to live outside of the womb.

The next two weeks were very heart-wrenching. I did some research and found that many women had positive stories after using the “bed rest and Boost” method - with as much horizontal bed rest on the left side as possible and drinking three Boost protein drinks a day. One of the doctors that pioneered the laser surgery did studies on the effects and showed positive statics associated with the regimen. I was all for anything that would help, so I started it right away. I would lay in bed all day reading stories about TTTS tragedies and triumphs, and cry my heart out. I felt guilty for all of the sobbing, since I felt like my poor babies could sense my despair. I didn’t want them to feel like I wasn’t confident in their ability to beat this. I know it sounds silly, but that’s how I felt. I prayed constantly...not just for God to help my babies fight this, but also for me to be accepting of whatever his plan was for me. I knew one thing for sure: this was out of my control at this point and I was going to have to accept whichever way it went. I started to get uncomfortable; the fluid on Baby A was about three times what it should have been at this point, and it made my sides ache, like I couldn’t stretch any farther. I looked at least two months farther along than I was, and had about an extra liter of fluid around Baby A. It was during this time that I started to feel the babies move, which was such an amazing blessing. I knew if they moved, they were alive. This kept my sanity.

Finally it was time to head to Pennsylvania; it had felt like a lifetime passed in those two weeks spent waiting. We were so very fortunate that Charlie’s family lives in the Philadelphia area, since many families have to find the financial resources to pay for hotels and even plane tickets to get to a hospital that specializes in this surgery. We were also so relieved to find out that TriCare would cover every bit of the treatment we needed. I can’t imagine going through something like this and having to worry about paying for the surgery, or find the resources to get to the only place that could offer help.





We had been forewarned it would be a long day of appointments, and it was. The doctors would meet with us at the end of the day, but not much would be told to us until then during the testing. We had fetal echocardiograms on both babies to assess if and how much the syndrome had affected their hearts, followed by a two hour anatomy scan. They looked at every elbow, finger, toe and organ to make sure everything was there and growing. Next was the geneticist who went through both of our medical histories and reviewed all of my first trimester screenings. Finally we met with the surgeon. He basically told us our babies were completely healthy at this point despite the early onset of the TTTS. When he told us they scored perfectly on their evaluation during the echocardiogram, I burst into tears. I was just SO proud of these little guys. Compared to some of the other cases they see there, ours was very mild. The scary thing about TTTS, though, is that it can all change in an instant. A woman can go for an appointment one day and be a stage I, then come back two or three days later and be in stage IV with her recipient in heart failure. The Doctor told us research indicates a certain percentage of women can stay in stage I and not progress past that during her pregnancy, but that if he were a betting man he’d put his money on us coming back in two weeks for laser ablation surgery. Because of the percentage that stay stable, CHOP doesn’t operate in stage I, we had to wait until things got worse with the babies before they could make them better. It was very bittersweet; on one hand I was so proud of my boys who were fighting hard against this unfair circumstance that had been handed to them, but to think they had to be ‘sicker’ before they’d get help was a horrible thought.

A few days later we went home and saw Dr. Margono again. Baby A (who we’d named Hayden) had a little more fluid and Baby B (Connor) had a little less, but other than that they still looked great. They were both very active, and Connor still had a visible bladder on ultrasound, meaning he still had enough amniotic fluid to drink. We went to Dr. Margono twice a week for the next two weeks, and things still remained the same. Unequal fluid, but visible bladder. Every time the blood flow would be measured in their umbilical cords and in their brains - every time, it was normal. Charlie and I were so glad things were staying stable for the babies’ sakes, but it was emotionally draining for the other shoe to drop. Every day we walked through the front doors to the MFM office, we knew that could be the day our babies were in distress and we’d be sent back to Philadelphia. We also knew there was always the possibility of not seeing both heartbeats. It’s a sickening thought, but it became our ‘new normal’.

Slowly, the time passed... And then seemingly all of a sudden, it had been a month since we’d been seen at CHOP. Each babies fluid hadn’t changed any more for the worse, but hadn’t improved either, and all other tests were normal. We decided to go back to CHOP not with the intention of definitely having surgery this time, but to be re-evaluated and make sure they were on the same page as Dr. Margono. I was almost twenty three weeks pregnant at this point. We were counting down the days to when I was twenty four weeks along, the holy grail of viability when babies can survive outside the womb. We didn’t want them born that early of course, but just knowing we had a shot at actually taking these babies home at some point was such a light at the end of the tunnel for us. We expected another day-long marathon of appointments at CHOP, and were surprised when they only did a detailed ultrasound and sent one of the surgeons in. He pretty much congratulated us and said we were amongst the lucky ones that are afflicted with this horrible syndrome. Of course anything could happen, but we were actually showing improvement since the month prior when we had been there. If we hadn’t been diagnosed prior, we wouldn’t have technically been in stage I at that point. They had us sign off on a bunch of documents so they could use our case in their research, and also so they could follow us after the babies’ birth to make sure they were ok. I was handed a release form for each baby to sign. What an exhilarating feeling it was to sign those documents. My eyes blurred with tears of joy, and it’s a moment I won’t ever forget. These doctors, who were experts in the syndrome that had threatened my babies’ lives for months now, were confident that they would both be born alive, and they’d both ultimately be fine!

Leaving CHOP that day, we felt like a huge weight had been lifted from our shoulders - we could finally breathe and let ourselves believe that taking these babies home was actually a strong possibility. It was an amazing feeling that I’ll never forget. Charlie’s father took us shopping that night at Babies R’ Us to celebrate. Up until then, I had been so hesitant to buy anything for them, I had no idea what would happen. Would we be able to keep them both? Would one make it? It was so hard to think positively while having the knowledge of what statistically could happen. That evening, strolling through the store and picking out little outfits, bath supplies and toys, I started allowing myself to picture our little family. It was so liberating to quiet the fear inside me and let the hope dominate.




We stayed for Easter with Charlie’s family and headed back to New York that evening. The whole way home I had contractions, a nice reminder that even though the babies were looking good, I needed to take it as easy as I could in the upcoming months. Lots of water and rest that evening made them back off. Dr. Margono saw us the next day, and said I could come once a week from that week until the 26th week instead of twice since things were going so well. A few days later we received a written report from CHOP, it most notably mentioned a likely delivery between 29 and 32 weeks gestation. I really hoped we could get further than that, but knew if our babies were born then, they’d most likely be fine after a somewhat lengthy NICU stay. It also recommended possible amnioreductions in the coming weeks if the fluid around Hayden continued to increase. This was a scary thought, as they would insert a needle into his part of the amniotic sac through my belly, and withdraw upwards of one liter of fluid out, and it probably would have to be repeated weekly until delivery once it was done the first time. To put it in perspective though, it is much less risky than laser ablation surgery on the placenta.

The weeks passed, and I tried to allow myself to count on the fact that we’d be having two babies. It was really hard, I knew with TTTS things could change for the worst even this late in the pregnancy. It was hard to get excited with the fear lurking over me - negative statements like “I’ll believe it when I see it” and “don’t put your eggs in one basket” are good examples of how I would feel at times. I’d wash some baby clothes, and the whole time be thinking, “Is this a good idea? Am I going to get to use them?” At week 27, Dr. Margono was doing an ultrasound, probably about my 50th of the pregnancy, and I was doing my usual, trying not to pass out or throw up from lying on my back for so long. He seemed perplexed, and told us that the fluid between the babies had become even between them - normally that would be a great thing to hear, but just a few days ago there had still been a sizable amount of fluid greater on Hayden than Connor. When any changes occur that quickly in a twin-to-twin case, it’s cause for concern. They hooked me up to the non-stress test monitors, and the nurse told me I should really be bringing a hospital bag with me to appointments from now on. For the next two weeks things continued to hold steady at even fluid, until my 30-week appointment. All of a sudden, Hayden had hardly any and Connor now had an extra amount around him. Their blood flow through their brains and umbilical cords were still normal, but Dr. Margono decided to have me admitted for observation anyway. We had gotten this far and no one was taking any chances.

Off I went to the Labor and Delivery unit at St. Peter’s Hospital. For two days I was hooked up to a contraction monitor and a heart rate monitor for each baby strapped to my belly. All night long one baby would move away from the monitor and we’d lose his heartbeat, the nurse would come back in and find it...only to have the other baby move a few minutes later. It was pretty much impossible to sleep! Not only from the disruption, but every time one of the heartbeats would stop, the thought would flash through my mind that we’d lost a baby. Finally on the third night, Connor’s heart rate would dip very low and beat about half as fast as it should have been, for about five minutes at a time. He was showing signs of distress and the OB on call came in and told me enough was enough; they were going to prepare me for the c-section. I started shaking uncontrollably, panicked at the all the thoughts racing through my mind; I wasn’t ready to not be pregnant anymore, I was terrified of the unknown effects of the TTTS on them, and would I even get to see them right after they were born? There was no time for me to talk to the Neonatologists to find out what to expect from my tiny babies. Dr. Margono arrived at the hospital, did an ultrasound during which Connor’s heart rate dropped again, and he basically ran out of the room calling for them to get an operating room ready. Thankfully my two favorite OB’s were there ready to do the c-section and in less than an hour I was being prepped for it.




Before I knew it, both babies were out and crying vigorously. My eyes filled with tears not just of happiness, but mostly relief! I knew that in all likelyhood, being born at thirty weeks meant they’d be just fine eventually. After all we had been through, the scariest, unknown-ridden part of it was over. They let us see each baby for a minute or two and then whisked them off to the NICU. I was wheeled to the recovery room and several hours later they brought Charlie and I to properly meet our sons. They were so very tiny, and hooked up to many, many wires and tubes - but they were beautiful. I spent the next four days in the hospital, recovering from the c-section and spending most of my time down the hall in the NICU. We got to hold Hayden and Connor, and it was such an amazing feeling, although scary at times. I wished with all my heart I could take away any pain their tiny bodies went through, with the iv lines being inserted and breathing tubes put down their throats. Being discharged the fifth day was probably one of the worst experiences of my life. I cried the whole way out of the hospital, the 45-minute drive home, and the entire rest of the night. The one thing that kept me going was the thought that as soon as I woke in the morning, I would get ready and head right back to be with my boys.

For the next 46 days, that is what I did. Get up, go to the hospital, stay until 7pm, go home and eat something before falling into bed and starting it over the next day. It was amazing to see them grow and make progress each and every day. I learned how to nurse them, these tiny little babies that most people would assume just aren’t capable of exerting the energy to breast feed. Not my babies! With the help of our primary nurse, Betsy, we worked day after day, making slow progress at it - but eventually they could take their full feeds from me nursing them and not through their feeding tubes. It was exhausting at times, but I couldn’t imagine anything being important enough to keep me from being with them. After they had been there about a month, I finally let myself completely accept that I was a mother to not one, but two perfect little boys. The uncertainty of them making it was gone in my mind. Then, they finally got to come home, and it was a huge victory for me, Charlie, and especially Hayden and Connor.
 
Now at home, I just stare at them in awe. Did we really make it through this unscathed? We are so incredibly lucky, so many families afflicted with TTTS are not. My heart aches for them knowing our outcome could have been very, very different. I am so overwhelmingly proud of these boys, they have stolen their Momma’s heart with their courage, strength and perseverance through everything that was put against them. Not a day will go by when I won’t thank God for these miracles he has allowed me.


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