Today is the first World Prematurity Day. In honor of today, I thought I’d try to summarize our experience this past year. It’s hard to know what to include and what not. This version of the story is by no means complete. But it does include some of what happened in the delivery room, something I haven’t published before. I do plan to publish the full birth story on their birthday.
My story is long and one filled with hope, happiness, and devastation. It all began at 13 weeks when I found out we were expecting identical twins during the NT scan. The doctor told me that the babies were measuring a week apart – not something that was usually seen so early. He showed me how Baby B’s umbilical placement was on the edge of the placenta compared to Baby A’s placement in the center. At that appointment I first learned about twin-to-twin transfusion syndrome (TTTS).
I immediately went online and reached out to the multiples community; I was so overwhelmed and excited! Very quickly I learned that I needed to be monitored closely. My doctor, though, had other ideas and didn’t think I would need further monitoring and so wouldn’t schedule an ultrasound until 20 weeks. But based on everything I was reading, that could possibly be too late. In advance of my upcoming 16 week appointment, I called every single perinatal doctor in my area; none would take a patient as a self-referral. One finally did, and I made my appointment for the day following my 16w checkup. I told the doctor about it, that my gut said something wasn’t right; she told me I needed to relax and that an ultrasound at 16 weeks wouldn’t tell us anything. I went to the appointment anyway.
At 16 weeks, my babies were measuring 3 weeks apart. They immediately referred me to the TTTS specialists in Baltimore at the Center for Advanced Fetal Care, the closest location to us. And thankfully this location is only an hour from us. All my hopes and excitement about the pregnancy came crashing to an abrupt end. I was terrified and devastated. I had to ban my internet time for the weekend because reading the stories of TTTS survivors and victims just ripped my heart out.
For the next 3 weeks I was monitored weekly in Baltimore by the TTTS doctors. They determined that I did not have TTTS but rather severe, selective IUGR in Baby B. I had none of the factors of TTTS (we had visible bladders, the amniotic fluid was in normal ranges, etc). We also determined over those appointments that Baby B’s umbilical cord had sporadic absent flow. We learned that the flow could easily become a reversed flow. If that happened, if we were at a viable point, we would have to deliver immediately. We learned that if Baby B were to die in utero, a distinct possibility, that we would have to deliver; because the babies shared a placenta and so shared blood flow, if one of the babies died, then Baby A could die or suffer severe neurological damage. We learned about umbilical cord ligation: a laser surgery that would basically clamp baby B’s cord, killing him, but ensuring the survival of Baby A. We learned about the laser surgery for TTTS, but I didn’t have TTTS and so wouldn’t qualify.
At 20 weeks my regular care was transferred to the high risk doctors in my local area. My first appointment with them was the standard 20 week scan. The benefit of having all the ultrasounds from week 16 on is that we knew the baseline growth measurements for both babies. At 20 weeks, Baby B didn’t grow at all. My local doctors immediately suggested the ligation surgery. We were devastated. On the ultrasounds, little Baby B looked healthy; he was just as active as his brother, just half the size. Two days later we went back to Baltimore to get their opinions. We were given several options. We chose the wait and see approach. The doctors there felt that because Baby B was so small, if he did die in utero, the chances that Baby A would be affected were minimal. We decided that Baby B’s fate was up to him – we wanted to give him a chance.
The next week Baby B grew 19%. We were stunned! And at that time we decided that we’d always give Baby B a chance. We kept having weekly appointments, alternating between the doctors in Baltimore and the local high risk doctors. I always felt like our local doctors thought we were making the wrong decision; the Baltimore doctors never made me feel that way.
At 25 weeks, the local doctors admitted me to the hospital for monitoring. There I received ultrasounds and Doppler studies twice a day; I was the first one each morning and the last one each day. On the fourth day, we were told that Baby B was in imminent danger and that we needed to deliver. But we requested that our doctors contact Baltimore and see if they agreed. They didn’t. I went in for another ultrasound, and the local doctors looked for specific Doppler numbers; everything was in MY normal range. Not normal by any other means, but normal for my case. I requested that I check out of the hospital immediately. The stress they were causing each day was not good for me or the babies. We arranged a plan where I’d return for twice weekly monitoring. I returned twice more to the doctors in Baltimore. At the last appointment, based on just the report numbers, the doctor was confident that I would make it to 30 weeks. As we were talking and planning the next several weeks, he decided he wanted to scan me himself. He did, then stopped, and said that if the local high risk doctors decided that I needed to deliver, he wouldn’t stop them again. We asked what changed, but he couldn’t point to anything, just his gut instinct.
Two days later at my local appointment we saw that Baby B’s Doppler showed reverse blood flow. Surprisingly, my husband and I argued. Could we wait longer? What are our options? We finally decided that we’d played poker with the babies long enough; keeping Baby B inside any longer was getting more and more dangerous. It would be up to him now.
So a few hours later, I found myself up in surgery, at 27 weeks exactly.
Baby A was delivered, and we heard a cry. Sebastien was born at 2lb 1oz. Baby B was delivered, and we heard silence. Samuel was born at 12 ounces. My doctor came over and said he was sorry about “the little one.” I couldn’t tell what was happening. My husband was next to Sebastien, trying to watch what was happening with Samuel. I heard alarms; my husband came back to my side. The room was chaos. The neonatologist came over and said she’d done everything she could for Samuel, asked if we wanted to say goodbye. She brought him to us wrapped in a blanket. He was beautiful; he was tiny; I loved him so much. My husband held him, I stroked his head, leaned over to kiss him, talked to him. I told him I loved him, but it wasn’t his time. Please Sam. He moved. And he moved again. My husband and I both gasped. My husband placed his finger on Sam’s chest; he could feel a pulse. He called a nurse over, told her that he was moving, that there was a pulse. The nurse said it was all reflex. But no, our baby was alive. My husband took Sam over to the NICU team, asked them to please, please look at our baby again. They did, but the entire time, many of the team was shaking their heads. They gave Sam another dose of epinephrine. His heartbeat stabilized; they were able to put a ventilator tube down his throat.
|Sam after birth.|
|Sebastien after birth.|
|Footprint comparison at birth.|
My husband followed the boys down to the NICU while I was closed up and moved to recovery. I was told I couldn’t go see them until I could sit fully upright without being sick. I remember being in recovery and forcing my toes to move, forcing myself to try getting moving. In my hospital room, I kept trying. Hours later I was finally able to be wheeled down.
No matter how much you prepare, even having toured the NICU and knowing what things would look like. Nothing can prepare you. We visited Sebastien first. He was so tiny! He was doing well though and only on CPAP and under the bili lights. I learned that I wouldn’t be able to hold him until his umbilical line was removed. I learned about cradling, how to touch our delicate babies. We then went to see Samuel He was teeny. His head was the size of a racquetball. His body reminded me of a Barbie doll. Sam was on the high frequency oscillator since that vent is much more gentle on the lungs. I was afraid to touch him; but I found courage and gently placed my hands around him.
Sidenote: Months later we found out that the NICU had only prepared one spot, only prepared tags for Baby A. They were told to only expect one baby. I was horrified when I heard this, and so we asked around. Sam’s nurse confirmed it; he was in the delivery room and when Sam wasn’t responding he was sent back down. When Sam came down, the nurses, the staff stood in awe, and then quickly got his paperwork completed.
|First and only picture as a family of four|
|First and only time to hold both babies together|
Later that evening, the neonatologist on duty came to my hospital room. She apologized and said she’d followed all guidance from the preemie care standards (can’t remember the name of this). I told her that nothing about my case had been clinical, that nothing had been standard or normal. To please not treat Sam as a normal case, that if something wasn’t working, to try something else, to please just give him a chance.
The next months passed in a blur. We joked that Sebastien was on cruise control. He only got sick once, an infection that antibiotics wiped out; he was intubated for a day and a half during this. He does still have a large PDA, but he shows no signs of any issues. We see the cardiologist every 3 months to check its status. Will it have to be surgically closed one day? We’ll see.
|Sebastien and mom kangaroo together.|
|Sebastien takes a nap.|
|Sebastien checks in on Sam.|
Samuel’s journey was anything but cruise control. During his first three weeks of life, he tripled his body weight! The poor baby was literally starving in utero and was finally able to get the nutrition he needed. He was on the oscillator for 6 weeks; the vent for 4. I was able to hold him for the first time at 10 weeks. 10 weeks!!! He too had a PDA, and ASD, and a VSD in his heart. We knew that the ASD would have to be closed at some point, when he reached at least 10 pounds.
We were smooth sailing finally, for him anyway, and then he developed NEC. This happened within 24 hours of HMF being added to his breastmilk. Was that the cause, we’ll never know. Rigorous antibiotics treated him and we moved on again. Until he reached a certain point with feeds and he’d get sick again. At that point we discussed doing exploratory bowel surgery. I was nervous but wanted it; I want to fix what’s wrong and move forward. But the neos, the surgeon, and the anesthesiologist were not in agreement. So we got him well again and started over. This cycle happened 3 times, each time he’d get sick when he reached a certain point. During this time he had laser surgery for ROP, he bounced between the vent, the cannula, and CPAP. Around the third time he got sick, he had another echocardiogram. We learned he had something called pulmonary vein stenosis (PVS). This was a devastating diagnosis as it’s incredibly rare and there’s no real treatment.
Pulmonary vein stenosis is a rare and serious condition in which there is an obstruction (blockage) in the blood vessels that bring oxygen-rich blood from the lungs back to the heart. It can be isolated to a single pulmonary vein, but most often occurs in multiple veins simultaneously.
The stenosis occurs due to an abnormal thickening and, thus, narrowing of the walls of the veins. Pulmonary vein stenosis frequently progresses. As a result, partial loss or even total obstruction of flow to a vessel or vessels may occur.
Surgery to widen the narrowed veins and catheterization to stretch the vessel are usually short-term solutions since the obstruction typically recurs within a month to six weeks. (source, Children’s Hospital Boston)
We found very little information to research on this, only that Children’s Hospital in Boston is really the only location doing major research. Their current research involves chemotherapy drugs. That was just horrific to me as I couldn’t imagine my Sam undergoing chemotherapy. We questioned why and how he could do so well with this condition. We were told that frequently babies will do well, but when their hearts give out, “they go fast.” To make matters worse, Sam also had pulmonary hypertension. We asked our doctors to contact Boston, to find out more information.
|A favorite picture of Sam.|
|Sam on CPAP|
At this time, Sam went back on the vent. Our hospital has a policy that vented babies cannot be held as the risk of extubation is too high. With our diagnosis, I didn’t care. I knew our time could be limited; I was going to hold my baby damnit, so figure it out. We’d been there with Sam for 4 months now, so the nurses knew me, knew I understood the risks, knew how to handle the situation. Getting him out and transferred to me was a complicated dance that involved two nurses and a respiratory therapist, but it was possible.
In the meantime we knew we needed to fix Sam’s belly. We couldn’t grow him big enough for the various surgeries he needed if we couldn’t feed him. Being on the IV nutrition was wreaking havoc on his liver (he was on an experimental drug called Omegaven to help with this). We were finally at a point where all doctors agreed, that to move forward we had to go in and see what was happening with his belly. Waiting during that surgery was tense. But it was a success. When his intestines were healing from the NEC, they fused together at two points. A small enough passage way was there for food to pass, but not much. So once more food was introduced, everything got backed up. We knew the recovery from surgery would be rough, and it was. Each time they’d try to wean his pain meds was a failure. I hated that my baby needed morphine and other pain meds.
The Sunday before he passed was one of the good visits. He was alert and responsive to us. The very next day, on Monday, he seemed off, not responsive, not doing well. That evening we got the phone call. Sam wasn’t responding, they couldn’t keep his oxygen saturation up. They called in the cardiologist to do an echo. We could just tell that his heart was enlarged, that it was working incredibly hard, yet it couldn’t pump blood. We were told that they could try a medication, that we’d know soon after whether it was working. We were told about chest tubes, etc. But we knew. At that point, he was being bagged because the vent wasn’t working for him anymore; they started chest compressions. We told them to stop.
Sam was unhooked from everything and brought to us in a room. I was able to hold him in his final moments. I felt him take his last breaths. We held him, sang to him, read him his favorite book, kissed him. And finally said goodbye. Our nurse was crying; the neo was shaking.
|Sam’s memorial garden.|
At five months and one day, we lost our son Sam. He was an amazing baby, overcame more than some adults ever have to overcome. He found a hard battle.
I’m leaving out so much with Sam’s story. It’s just so hard to know what to say about it, what to include, what to leave out.
The local non-profit Preemies Today has joined with Groupon’s G-Team to raise money to buy more kangaroo chairs for local NICUs. Preemie moms spend many hours in these chairs holding their tiny babies. I spent pretty much every single day Sebastien was in the NICU in these chairs. And I spent as much time as I was able holding Sam.
Please consider helping the cause.
Now that we’re coming up on a year that everything happened, I’m going back to my original posts and writing about what was going on in my mind then, and what I think about it now. So some posts won’t give all the information….because as it happened last year, things would occur days or weeks later. I’m hoping that by doing this, I can process the last year, better understand the events, and maybe document some of the missing gaps.
A year ago I was still processing that we were having twins, still coming to grips that something wasn’t quite right.
I scoured the internet for information about multiples, about discordant growth, about anything relating to the little bit of information I had: mono di twins and measuring 1 week apart at 13 weeks. Most information led me to TTTS. I was just devastated based on what I was reading.
What is TTTS?
-Twin to Twin Transfusion Syndrome (TTTS) is a disease of the placenta (or afterbirth) that affects identical twin pregnancies.
-TTTS affects identical twins (or higher multiple gestations) who share a common monochorionic placenta.
-The shared placenta contains abnormal blood vessels which connect the umbilical cord and circulations of the twins.
-The common placenta may also be shared unequally by the twins
-The events in pregnancy that lead to TTTS are all random.
-TTTS is not hereditary or genetic, nor caused by anything the parents did or did not do.
-TTTS can happen to anyone.
Through various forums online, I found the TTTS Foundation and was able to speak to Mary Slaman-Forsythe, the foundation’s director. She gave me such valuable information. She encouraged me to gather as much information as I could, to be proactive about my care.
The many women I connected with online also encouraged me to be proactive, to find out what was going on. My ob’s standard was to not have an ultrasound until week 20, but everyone told me that was too late. When I called my ob to ask about further monitoring, about having another ultrasound, she told me that I needed to relax, that worrying and stressing would do no good, especially this early in the pregnancy. But I’ve always listened to those nagging feelings. And the information I discovered online was frightening; I needed to know more so that I would better understand what we were facing. Just based on that ‘unusual’ 13 week scan, I couldn’t relax, I needed to know.
I learned about perinatal doctors, specialists for high risk pregnancies, and realized I needed to be seen by one. Based on my prior conversation with the ob, I knew she’d brush off my concerns again. So I started making phone calls and got shot down by every office. Turns out they only took referrals. But I wouldn’t give up; I finally found a doctor who would take me as a self-referral.
If it hadn’t been for the support I found online, I’m not sure I would have ever been as proactive as I was throughout the pregnancy and after. These women encouraged and supported me. Many of my online friends I still consider friends. Some are even my real life friends now. They helped me throughout my experience, and I hope that I can do the same for other women who find themselves in a similar situation. It’s so isolating, so scary, it’s important to realize that there are people out there who understand. Thank you to all my online friends for your support this last year.