Hayden as well as Connor's TTTS even out yesteryear Lindsay Castiglione
H5N1 friend of mine, Lindsay Castiglione, posted this every bit a Facebook greenback August 4th, 2011, after a harrowing pregnancy. Her identical twin boys were diagnosed with Twin to Twin Transfusion Syndrome (TTTS) at 16-weeks as well as were brought into the basis at 30-weeks via an emergency C-section June 16th, 2011. They spent 46 days inwards a NICU 45-minutes away from Charlie as well as Lindsay's home. Recently, Hayden as well as Connor celebrated their initiative off birthday! I would also similar to add together that Lindsay only breastfed as well as pumped for her boys their entire initiative off year. Amazing!
Since posting this "note," Lindsay has been asked repeatedly to weblog nigh her experience with TTTS. I am thence excited to finally portion her floor with you, with Lindsay's permission, of course. Thank you lot for sharing your story, Lindsay!
-Kimber
(For to a greater extent than data on the differences betwixt identical as well as fraternal twins, check out my weblog post "Identical or fraternal.")
H5N1 twelvemonth agone I would have got told you lot my greatest fearfulness was that I’d never live a mother. I’d known since before coming together Charlie that I had some issues that would brand it necessary to role fertility treatments to acquire pregnant. We were real fortunate that on the initiative off endeavor of IVF after moving to New York, nosotros were successful. Charlie as well as I were ecstatic, as well as fifty-fifty to a greater extent than thence when nosotros industrial plant life out nosotros were having identical twins. Little did I know that my fearfulness of never becoming a woman nurture wouldn’t necessarily move away 1 time I was pregnant as well as got past times the initiative off trimester. It was replaced past times an fifty-fifty deeper, to a greater extent than paralyzing fearfulness when nosotros were faced with a complication that could real good pick out both of their lives before they were born. This is our floor of Hayden as well as Connors’ battle with Twin to Twin Transfusion.
It all begins inwards such a uncomplicated as well as basic way; nosotros wanted have got a baby...or two, every bit nosotros were genuinely hoping for twins. On Dec 12, 2010, nosotros industrial plant life out that nosotros would have got our gamble at it. We had several early ultrasounds after finding out nosotros were expecting, as well as at calendar week vii nosotros learned we’d live having identical twins when nosotros saw 2 tiny heartbeats within 1 gestational sac. We were thence incredibly excited nigh this - having identical twins felt thence special to us. My due appointment was August 22nd, incredibly the one-year anniversary of my mother in law Linda’s passing. We knew since twins are born before than 40-weeks nosotros wouldn’t genuinely live having them on that day, but it withal felt important to portion that appointment with her. I took it every bit a sign that she’d live watching over us as well as would assist maintain the babies safe.
In the commencement I didn’t know anything nigh the risks involved with the type of twins that were growing within me; they are monochorionic (one placenta), but diamniotic - 2 amniotic sacs within 1 larger one, as well as the babies are separated past times a whisper-thin membrane giving them each their ain fluid. The initiative off trimester was scary every bit it is pretty much for whatsoever woman; it is the fourth dimension frame where anything tin move on as well as disrupt the pregnancy. Around calendar week 13, nosotros had some testing done that thankfully showed the babies to live at real depression endangerment for chromosomal abnormalities. The ultrasound tech also noted the sparse membrane separating the babies; this was important every bit it ruled out them beingness monochorionic, monoamniotic twins, a real rare as well as unsafe type of twinning that has a high fatality rate. The babies don’t have got whatsoever separating membrane inwards this type, as well as cord entanglement is a real existent possibility. Everything was looking neat at this dot as well as I was starting to allow myself believe that I would genuinely acquire to live a woman nurture after all.
After making it to calendar week 15, the nausea as well as exhaustion finally started to fade, as well as I started to relax fifty-fifty more. Then, during an ultrasound at our OB, the technician (one that I hadn’t had before) could non uncovering the membrane betwixt the babies. I told her nosotros had seen it before, but she argued as well as said she did this all the fourth dimension - if it were at that spot she’d reckon it. H5N1 few minutes later on I saw 1 of the doctors from the practice, as well as he wasn’t concerned at all. He said with how difficult the membrane is to see, she in all probability simply missed it. The adjacent week, I had some other appointment with a dissimilar physician at the practice. He had read inwards the notes that at that spot was no membrane visualized as well as wanted to produce his ain ultrasound to check. He could non uncovering it either, as well as told us he thought the babies were inwards fact monochorionic, monoamniotic twins. The component division scheduled me an appointment with the high-risk Maternal-Fetal Medicine unit of measurement at the infirmary for 4 days later. I went dwelling as well as of course, googled mono/mono twins, as well as terrifying statistics popped up. I spent the adjacent 4 days worrying that nosotros would have got real premature babies, if they fifty-fifty made it at all, as well as prayed that they had simply missed the membrane on the ultrasounds.
Waiting the 4 days until our appointment was tough, it seemed similar forever. We were brought into an ultrasound room, as well as inwards comes Dr. grand with non fifty-fifty an introduction. He simply went correct to operate scanning the babies, starting with babe A. We knew the babies were boys at this point, as well as he confirmed that. He kept maxim how salubrious H5N1 looked, how “happy” he was. Then he got to Baby B, as well as became real quiet. He was having a difficult fourth dimension getting measurements on him, I asked if I could displace whatsoever agency to help, to which he chop-chop told me no, it wouldn’t modify anything. After nigh twoscore minutes, I dared inquire if he saw the membrane. He distractedly said yes, at that spot was a membrane. I allow out a huge sigh of relief as well as squeezed Charlie’s hand. In the adjacent breath he told us that was non the problem, as well as that the babies had Twin-to-Twin Transfusion. The ground they couldn’t reckon the membrane at the in conclusion ultrasound was because it is shrink-wrapped roughly Baby B. He went on to demonstrate us how the only agency you lot could reckon the membrane was to expression betwixt the baby’s mentum as well as chest. Baby B had almost no fluid, as well as Baby H5N1 had likewise much. Dr. grand explained their shared placenta was routing all the nutrients, fluid as well as blood menstruum to Baby A, leaving Baby B with almost nothing. Baby H5N1 was the “recipient”, as well as Baby B the “donor”. I asked what nosotros could produce nigh it, anxious for his response but at the same fourth dimension terrified to know what he’d say. He bluntly told us surgical procedure to disconnect the blood vessels inwards the placenta betwixt the babies would live our only alternative at saving them. If nosotros did nothing, the mortality charge per unit of measurement was over 90% for a instance every bit severe as well as every bit early diagnosed every bit mine. With surgical procedure we’d have got a 60% gamble of them both beingness born as well as living, as well as a higher rate, nigh 80% for at to the lowest degree 1 babe making it. Even though Baby H5N1 had plenty of the resources, it would stress his pump sooner than later on as well as set him inwards pump failure. Baby B would halt upward malnourished as well as anemic, as well as his organs would also start failing. I was 16 weeks as well as 4 days pregnant. We had no alternative but to endeavor as well as procedure everything they were telling us, as well as produce whatever nosotros could to preserve our babies.
The current of air was knocked out of me, as well as my caput swam with statistics as well as gut-wrenching fear. You know that feeling of the bottom dropping out from underneath your world? Where you lot remember “This changes everything forever. Nothing volition ever live the same.” These were understatements compared to what I was experiencing. It was absolutely, positively terrifying. We had spent all the savings nosotros could component division with to acquire pregnant with these babies - if the worst happened as well as nosotros lost the babies, it could live many years or fifty-fifty never before I got pregnant again. It was horrible to fifty-fifty remember of coin at a fourth dimension similar this, but I was thence afraid my gamble at maternity was beingness ripped away from me. The fiscal slice was, unfortunately, a factor.
I went inwards the bath as well as cried for a few minutes, but wanted to acquire dorsum to Charlie who was waiting inwards an empty office. The nursing staff was scrambling to acquire inwards contact with the fetal surgeons at the Children’s Hospital of Philadelphia to reckon when they could acquire me inwards for surgery. There are only a handful of hospitals inwards the U.S.A. that perform the surgery, as well as real few that have got the form of experience as well as reputation to live leaders inwards the patch of TTTS treatment. CHOP was 1 of them, and, at a 5-hour drive, away it was a goodness alternative for us. All of my records as well as ultrasound images were faxed to them thence they could evaluate the severity of things, as well as then they would schedule an evaluation as well as surgical procedure based on their feelings of how urgent this was. We left the component division with a hope we’d hear from CHOP within a few hours. I was scared as well as emotional, but withal held hope inwards my pump that they could assist our babies. Less than an lx minutes later on I got a telephone telephone from the fetal surgical procedure team’s secretary. They wanted me to hold back 2 weeks (‘TWO WEEKS!!’ I thought. ‘How tin they hold back that long to assist my babies?’) as well as for me to live monitored twice a calendar week inwards the meantime past times Dr. grand to brand for certain the syndrome didn’t progress rapidly. The adult woman explained to me that if they did produce the surgical procedure when nosotros were there, waiting until the 18th calendar 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 phase I, but that I was thence early inwards the pregnancy nosotros withal had to pick out it real seriously. The reality was that real few women diagnosed this early inwards their pregnancy acquire to pick out dwelling their babies. I withal had months to move before the babies were considered ‘viable’, or able to live exterior of the womb.
The adjacent 2 weeks were real heart-wrenching. I did some query as well as industrial plant life that many women had positive stories after using the “bed residuum as well as Boost” method - with every bit much horizontal bed residuum on the left side every bit possible as well as drinking 3 Boost poly peptide drinks a day. One of the doctors that pioneered the Light Amplification by Stimulated Emission of Radiation surgical procedure did studies on the effects as well as showed positive statics associated with the regimen. I was all for anything that would help, thence I started it correct away. I would lay inwards bed all solar daytime reading stories nigh TTTS tragedies as well as triumphs, as well as yell my pump out. I felt guilty for all of the sobbing, since I felt similar my misfortunate babies could sense my despair. I didn’t desire them to experience similar I wasn’t confident inwards their mightiness to shell this. I know it sounds silly, but that’s how I felt. I prayed constantly...not simply for God to assist my babies struggle this, but also for me to live accepting of whatever his excogitation was for me. I knew 1 affair for sure: this was out of my command at this dot as well as I was going to have got to have got whichever agency it went. I started to acquire uncomfortable; the fluid on Baby H5N1 was nigh 3 times what it should have got been at this point, as well as it made my sides ache, similar I couldn’t stretch whatsoever farther. I looked at to the lowest degree 2 months farther along than I was, as well as had nigh an extra liter of fluid roughly Baby A. It was during this fourth dimension that I started to experience the babies move, which was such an amazing blessing. I knew if they moved, they were alive. This kept my sanity.
Finally it was fourth dimension to caput to Pennsylvania; it had felt similar a lifetime passed inwards those 2 weeks spent waiting. We were thence real fortunate that Charlie’s identify unit of measurement lives inwards the Philadelphia area, since many families have got to uncovering the fiscal resources to pay for hotels as well as fifty-fifty plane tickets to acquire to a infirmary that specializes inwards this surgery. We were also thence relieved to uncovering out that TriCare would encompass every flake of the handling nosotros needed. I can’t imagine going through something similar this as well as having to worry nigh paying for the surgery, or uncovering the resources to acquire to the only identify that could offering help.
We had been forewarned it would live a long solar daytime of appointments, as well as it was. The doctors would come across with us at the halt of the day, but non much would live told to us until as well as then during the testing. We had fetal echocardiograms on both babies to assess if as well as how much the syndrome had affected their hearts, followed past times a 2 lx minutes anatomy scan. They looked at every elbow, finger, toe as well as organ to brand for certain everything was at that spot as well as growing. Next was the geneticist who went through both of our medical histories as well as reviewed all of my initiative off trimester screenings. Finally nosotros met with the surgeon. He basically told us our babies were completely salubrious at this dot despite the early onrush of the TTTS. When he told us they scored perfectly on their evaluation during the echocardiogram, I outburst into tears. I was simply SO proud of these piffling guys. Compared to some of the other cases they reckon there, ours was real mild. The scary affair nigh TTTS, though, is that it tin all modify inwards an instant. H5N1 adult woman tin move for an appointment 1 solar daytime as well as live a phase I, as well as then come upward dorsum 2 or 3 days later on as well as live inwards phase IV with her recipient inwards pump failure. The Doctor told us query indicates a for certain per centum of women tin remain inwards phase I as well as non progress past times that during her pregnancy, but that if he were a betting human being he’d set his coin on us coming dorsum inwards 2 weeks for Light Amplification by Stimulated Emission of Radiation ablation surgery. Because of the per centum that remain stable, CHOP doesn’t operate inwards phase I, nosotros had to hold back until things got worse with the babies before they could brand them better. It was real bittersweet; on 1 mitt I was thence proud of my boys who were fighting difficult against this unfair circumstance that had been handed to them, but to remember they had to live ‘sicker’ before they’d acquire assist was a horrible thought.
H5N1 few days later on nosotros went dwelling as well as saw Dr. Margono again. Baby H5N1 (who we’d named Hayden) had a piffling to a greater extent than fluid as well as Baby B (Connor) had a piffling less, but other than that they withal looked great. They were both real active, as well as Connor withal had a visible bladder on ultrasound, pregnant he withal had plenty amniotic fluid to drink. We went to Dr. Margono twice a calendar week for the adjacent 2 weeks, as well as things withal remained the same. Unequal fluid, but visible bladder. Every fourth dimension the blood menstruum would live measured inwards their umbilical cords as well as inwards their brains - every time, it was normal. Charlie as well as I were thence glad things were staying stable for the babies’ sakes, but it was emotionally draining for the other shoe to drop. Every solar daytime nosotros walked through the forepart doors to the MFM office, nosotros knew that could live the solar daytime our babies were inwards distress as well as we’d live sent dorsum to Philadelphia. We also knew at that spot was ever the possibility of non seeing both heartbeats. It’s a sickening thought, but it became our ‘new normal’.
Slowly, the fourth dimension passed... And as well as then seemingly all of a sudden, it had been a calendar month since we’d been seen at CHOP. Each babies fluid hadn’t changed whatsoever to a greater extent than for the worse, but hadn’t improved either, as well as all other tests were normal. We decided to move dorsum to CHOP non with the intention of definitely having surgical procedure this time, but to live re-evaluated as well as brand for certain they were on the same page every bit Dr. Margono. I was almost xx 3 weeks pregnant at this point. We were counting downward the days to when I was xx 4 weeks along, the holy grail of viability when babies tin live exterior the womb. We didn’t desire them born that early of course, but simply knowing nosotros had a shot at genuinely taking these babies dwelling at some dot was such a lite at the halt of the tunnel for us. We expected some other day-long marathon of appointments at CHOP, as well as were surprised when they only did a detailed ultrasound as well as sent 1 of the surgeons in. He pretty much congratulated us as well as said nosotros were alongside the lucky ones that are afflicted with this horrible syndrome. Of class anything could happen, but nosotros were genuinely showing improvement since the calendar month prior when nosotros had been there. If nosotros hadn’t been diagnosed prior, nosotros wouldn’t have got technically been inwards phase I at that point. They had us sign off on a bunch of documents thence they could role our instance inwards their research, as well as also thence they could follow us after the babies’ nativity to brand for certain they were ok. I was handed a release shape for each babe to sign. What an exhilarating feeling it was to sign those documents. My eyes blurred with tears of joy, as well as it’s a 2d I won’t ever forget. These doctors, who were experts inwards the syndrome that had threatened my babies’ lives for months now, were confident that they would both live born alive, as well as they’d both ultimately live fine!
Leaving CHOP that day, nosotros felt similar a huge weight had been lifted from our shoulders - nosotros could finally breathe as well as allow ourselves believe that taking these babies dwelling was genuinely a potent possibility. It was an amazing feeling that I’ll never forget. Charlie’s begetter took us shopping that black at Babies R’ Us to celebrate. Up until then, I had been thence hesitant to purchase anything for them, I had no thought what would happen. Would nosotros live able to maintain them both? Would 1 brand it? It was thence difficult to remember positively piece having the cognition of what statistically could happen. That evening, strolling through the store as well as picking out piffling outfits, bath supplies as well as toys, I started allowing myself to moving painting our piffling family. It was thence liberating to tranquility the fearfulness within me as well as allow the hope dominate.
We stayed for Easter with Charlie’s identify unit of measurement as well as headed dorsum to New York that evening. The whole agency dwelling I had contractions, a dainty reminder that fifty-fifty though the babies were looking good, I needed to pick out it every bit slow every bit I could inwards the upcoming months. Lots of H2O as well as residuum that flush made them dorsum off. Dr. Margono saw us the adjacent day, as well as said I could come upward 1 time a calendar week from that calendar week until the 26th calendar week instead of twice since things were going thence well. H5N1 few days later on nosotros received a written study from CHOP, it most notably mentioned a probable delivery betwixt 29 as well as 32 weeks gestation. I genuinely hoped nosotros could acquire farther than that, but knew if our babies were born then, they’d most probable live fine after a somewhat lengthy NICU stay. It also recommended possible amnioreductions inwards the coming weeks if the fluid roughly Hayden continued to increase. This was a scary thought, every bit they would insert a needle into his component division of the amniotic sac through my belly, as well as withdraw upwards of 1 liter of fluid out, as well as it in all probability would have got to live repeated weekly until delivery 1 time it was done the initiative off time. To set it inwards perspective though, it is much less risky than Light Amplification by Stimulated Emission of Radiation ablation surgical procedure on the placenta.
The weeks passed, as well as I tried to allow myself to count on the fact that we’d live having 2 babies. It was genuinely hard, I knew with TTTS things could modify for the worst fifty-fifty this belatedly inwards the pregnancy. It was difficult to acquire excited with the fearfulness lurking over me - negative statements similar “I’ll believe it when I reckon it” as well as “don’t set your eggs inwards 1 basket” are goodness examples of how I would experience at times. I’d launder some babe clothes, as well as the whole fourth dimension live thinking, “Is this a goodness idea? Am I going to acquire to role them?” At calendar week 27, Dr. Margono was doing an ultrasound, in all probability nigh my 50th of the pregnancy, as well as I was doing my usual, trying non to move past times out or throw upward from lying on my dorsum for thence long. He seemed perplexed, as well as told us that the fluid betwixt the babies had acquire fifty-fifty betwixt them - ordinarily that would live a neat affair to hear, but simply a few days agone at that spot had withal been a sizable amount of fluid greater on Hayden than Connor. When whatsoever changes occur that chop-chop inwards a twin-to-twin case, it’s drive for concern. They hooked me upward to the non-stress attempt monitors, as well as the nurse told me I should genuinely live bringing a infirmary purse with me to appointments from directly on. For the adjacent 2 weeks things continued to concord steady at fifty-fifty fluid, until my 30-week appointment. All of a sudden, Hayden had hardly whatsoever as well as Connor directly had an extra amount roughly him. Their blood menstruum through their brains as well as umbilical cords were withal normal, but Dr. Margono decided to have got me admitted for observation anyway. We had gotten this far as well as no 1 was taking whatsoever chances.
Off I went to the Labor as well as Delivery unit of measurement at St. Peter’s Hospital. For 2 days I was hooked upward to a contraction monitor as well as a pump charge per unit of measurement monitor for each babe strapped to my belly. All black long 1 babe would displace away from the monitor as well as we’d lose his heartbeat, the nurse would come upward dorsum inwards as well as uncovering it...only to have got the other babe displace a few minutes later. It was pretty much impossible to sleep! Not only from the disruption, but every fourth dimension 1 of the heartbeats would stop, the thought would flash through my take away heed that we’d lost a baby. Finally on the tertiary night, Connor’s pump charge per unit of measurement would dip real depression as well as shell nigh one-half every bit fast every bit it should have got been, for nigh 5 minutes at a time. He was showing signs of distress as well as the OB on telephone telephone came inwards as well as told me plenty was enough; they were going to laid upward me for the c-section. I started shaking uncontrollably, panicked at the all the thoughts racing through my mind; I wasn’t cook to non live pregnant anymore, I was terrified of the unknown effects of the TTTS on them, as well as would I fifty-fifty acquire to reckon them correct after they were born? There was no fourth dimension for me to beak to the Neonatologists to uncovering out what to hold back from my tiny babies. Dr. Margono arrived at the hospital, did an ultrasound during which Connor’s pump charge per unit of measurement dropped again, as well as he basically ran out of the room calling for them to acquire an operating room ready. Thankfully my 2 favorite OB’s were at that spot cook to produce the c-section as well as inwards less than an lx minutes I was beingness prepped for it.
Before I knew it, both babies were out as well as crying vigorously. My eyes filled with tears non simply of happiness, but generally relief! I knew that inwards all likelyhood, beingness born at xxx weeks meant they’d live simply fine eventually. After all nosotros had been through, the scariest, unknown-ridden component division of it was over. They allow us reckon each babe for a infinitesimal or 2 as well as and then whisked them off to the NICU. I was wheeled to the recovery room as well as several hours later on they brought Charlie as well as I to properly come across our sons. They were thence real tiny, as well as hooked upward to many, many wires as well as tubes - but they were beautiful. I spent the adjacent 4 days inwards the hospital, recovering from the c-section as well as spending most of my fourth dimension downward the hall inwards the NICU. We got to concord Hayden as well as Connor, as well as it was such an amazing feeling, although scary at times. I wished with all my pump I could pick out away whatsoever hurting their tiny bodies went through, with the iv lines beingness inserted as well as breathing tubes set downward their throats. Being discharged the 5th solar daytime was in all probability 1 of the worst experiences of my life. I cried the whole agency out of the hospital, the 45-minute drive home, as well as the entire residuum of the night. The 1 affair that kept me going was the thought that every bit before long every bit I woke inwards the morning, I would acquire cook as well as caput correct dorsum to live with my boys.
For the adjacent 46 days, that is what I did. Get up, move to the hospital, remain until 7pm, move dwelling as well as swallow something before falling into bed as well as starting it over the adjacent day. It was amazing to reckon them grow as well as brand progress each as well as every day. I learned how to nurse them, these tiny piffling babies that most people would assume simply aren’t capable of exerting the unloose energy to thorax feed. Not my babies! With the assist of our primary nurse, Betsy, nosotros worked solar daytime after day, making tedious progress at it - but eventually they could pick out their total feeds from me nursing them as well as non through their feeding tubes. It was exhausting at times, but I couldn’t imagine anything beingness of import plenty to maintain me from beingness with them. After they had been at that spot nigh a month, I finally allow myself completely have got that I was a woman nurture to non one, but 2 perfect piffling boys. The dubiousness of them making it was gone inwards my mind. Then, they finally got to come upward home, as well as it was a huge victory for me, Charlie, as well as peculiarly Hayden as well as Connor.
Now at home, I simply stare at them inwards awe. Did nosotros genuinely brand it through this unscathed? We are thence incredibly lucky, thence many families afflicted with TTTS are not. My pump aches for them knowing our termination could have got been very, real different. I am thence overwhelmingly proud of these boys, they have got stolen their Momma’s pump with their courage, push clit as well as perseverance through everything that was set against them. Not a solar daytime volition move past times when I won’t give thank you lot God for these miracles he has allowed me.
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