Early July

In early July, we were in the midst of a normal pregnancy — at least, as normal as a pregnancy can be when you’ve found out that the one embryo you put in via in vitro fertilization (IVF) had spontaneously split into identical twins. Both “Baby A” and “Baby B” looked great at the 20-week anatomy scan ultrasound, with strong hearts and lungs, beautiful brains, full bladders, ten fingers and ten toes, and an almost identical amount of amniotic fluid to swim around in. A follow up ultrasound at 22 weeks again showed two healthy babies, and we began to anxiously plan for a soon-to-be greatly expanded family, with the purchase of two cribs, an extra car seat, and a brand new minivan — but no gender-specific clothes, as we wanted the twins’ sex to be a surprise, just as their older brother’s was. Their due date was November 3, though the doctors would be scheduling a C-section for 37 weeks, so we had until mid-October until their anticipated arrival.

But on Wednesday, July 13, at the babies’ 24-week ultrasound, we got the news we had been hoping to avoid but had quietly been dreading: the babies were showing signs of twin-to-twin transfusion syndrome (TTTS).  TTTS is a condition that occurs in maybe 20% of monochorionic diamniotic twins — that is, twins that have their own amniotic sacs, but that share a placenta.  Because they shared a placenta, Baby A and Baby B were also sharing blood flow, and while that had not caused any issues as of Week 22, just a couple of short weeks later, things had changed drastically; the blood vessels in the placenta were suddenly directing more blood flow toward Baby A (the “recipient”), while Baby B (the “donor”) was receiving much less. They had gone from having about 4 centimeters of amniotic fluid apiece to 9 centimeters for Baby A and 1 centimeter for Baby B.

As the high risk pregnancy doctor explained to us, the concern with TTTS was twofold: one, that the donor (Baby B) could, due to the dearth of amniotic fluid, roll over on his/her umbilical cord to cut off blood flow and nutrients; and two, that the recipient’s (Baby A’s) heart would have to work extra hard to deal with the increased blood flow. There was even a possible nightmare scenario where the demise of one of the twins could (again, because of the shared placenta and blood flow) cause a fatal stroke in the other.

We quickly readjusted our expectations and began hoping to keep the pregnancy going until 32 weeks (around September 8).  The doctor scheduled us an appointment with the regional specialist at Women & Infants Hospital of Rhode Island, and advised that the best course of action was to monitor the babies via ultrasound several times per week (as opposed to every other week, as we had done previously) to see if the TTTS stayed static or progressed beyond the initial Stage I diagnosis that we received at a follow up appointment with her on Friday, July 15 (where an ultrasound showed Baby A’s amniotic fluid rising to 10 centimeters, while Baby B’s had fallen to less than 1 centimeter). She encouraged us to go on our scheduled vacation to Narragansett, Rhode Island that weekend, knowing that we had a pair of appointments the next week that would serve to keep a close watch on the babies.

Rhode Island

So we did head to Narragansett, but our stay there wound up being short lived. By the morning of Tuesday, July 19, Shannon had developed a constant, sharp pain in her back and had some bleeding, and was advised by her doctor to head to the nearest hospital with obstetrics.  And so ironically, on the day we were scheduled for our appointment with the specialist from that very hospital, we wound up in the emergency room at Women & Infants in Providence.

The news was mixed. The babies were generally fine, moving around in their sacs and showing good heart rates, but Shannon was having low grade contractions. The doctors started giving her medicine to try to prevent full-fledged labor, and also decided as a precautionary measure to give the steroid shots that help expedite premature babies’ lung development, along with magnesium to help protect their brains. All the while, the nurses struggled nearly round the clock to monitor the babies on the fetal non-stress test, chasing Baby A and Baby B around Shannon’s stomach to try to keep a read on their heart rates. It meant Shannon slept in 15- and 30-minute increments, if at all.

On Thursday, July 21, an ultrasound showed that Baby A’s amniotic fluid had risen to 16 centimeters, but Baby B’s had also ticked up ever so slightly, to just below 2 centimeters. The babies were otherwise stable, and with Shannon feeling significantly better herself — and knowing that we had appointments scheduled for the following afternoon with the high risk pregnancy doctor as well as the NICU team at Beth Israel Deaconess Medical Center — the doctors at Women & Infants decided it made sense to discharge her. And so late that evening, we headed home to West Roxbury.

Back to the Hospital

Shannon’s recovery was, unfortunately, just a temporary one. By early the next morning, the back pain had returned with a vengeance along with some more bleeding, and we wound up rushing to Beth Israel at about 5:00 a.m. the morning of Friday, July 22. After a slight detour — Kevin drove to the emergency room which, as it turns out, is down the block from Beth Israel’s OB facilities — Shannon was examined by both the attending obstetrician at Beth Israel, and then the high risk pregnancy doctor. The doctors’ recommendation was to immediately do an amnioreduction — a procedure in which a needle would be inserted into Baby A’s amniotic sac, and fluid would be drawn off. The hope was that this would alleviate Shannon’s back pain and help to stabilize, at least temporarily, the imbalance between Baby A and Baby B.

Before performing the procedure, however, the high risk pregnancy doctor at Beth Israel asked us to meet with the NICU team. There is a chance, however slight, that an amnioreduction can induce preterm labor, and the doctors both wanted us to be prepared for that possibility, and wanted us to have basic instructions to provide the NICU team about how to care for our babies under those circumstances. After a brief but harrowing discussion about the challenges facing 25-week preemies, we discussed as a couple how far we wanted the NICU team to go to help our babies, and went back to the NICU team and the obstetricians with some guidance — again, just for the unlikely event that the pending amnioreduction were to bring about labor. But as this meeting ended and Shannon got up from the bed to use the bathroom, our string of bad luck had ratcheted up another level: Shannon’s water had broken.

The subsequent update from the doctors was surprising and, at least under the circumstances, mildly encouraging: they would not necessarily need to deliver the babies immediately, but could provide Shannon with antibiotics to try to avoid any uterine infections (which can happen once your water breaks), and continue to monitor the babies. There were instances of babies staying in for weeks after a mom’s water breaking, and Shannon was adamant that no matter how uncomfortable she was, nor how much she hated being bedridden, she would gladly go on bed rest for as long as the doctors would allow her. We once again adjusted our expectations, hoping we could get to 28 weeks (August 11) before our babies joined us on the outside.

Delivery

Unfortunately, though perhaps not unexpectedly given the way things had been trending over the previous 10 days, our unlucky downward spiral continued. The doctors and nurses continued to monitor as Shannon had low grade contractions and the babies kept kicking around, but by early in the morning on Saturday, July 23, they had seen something on the non-stress test that had them concerned: Baby A’s heart rate, while still within a normal range, had dropped somewhat sharply overnight, and was essentially holding too steady (instead of varying up and down a bit, as would normally be expected). The conclusion was not a welcome one: the babies would need to be delivered today.

While trying not to wallow in self-pity, we found this a bitter pill to swallow: our babies, who just two weeks before had been perfectly healthy and on track for a mid-October delivery date, were suddenly coming in July, at 25 weeks and 2 days. With 24 weeks standing as the demarcation between viability and non-viability, we were as scared as we’ve ever been in our lives; 25-weekers may survive outside the uterus, and they may even do very well long-term, but the odds are pretty good that something is going to go wrong.

As the doctors and nurses prepared for the C-section, we finalized baby names and hoped and prayed for the best. With two NICU teams standing by, the obstetrics team started the procedure just after noon, and at 12:15 pm and 12:16 pm, respectively, Baby A and Baby B were born (with Baby B even letting out a few audible little cries).

We had to wait what felt like an eternity to find out what was happening on the other side of the sheet, as Shannon asked the nurse seemingly every minute, “Are my babies okay?” “There are teams working on them right now,” was the response each time, though that could have meant anything. After probably 15 full minutes, Kevin was prompted to come over to meet the babies in turn, each of whom was alive and breathing with the help of a bag valve mask being manually pumped by a respiratory therapist from the NICU. Each of the twins was then carried to meet Shannon, and when asked for their names, we announced that Baby A was Emmet Michael, and Baby B was Finn Kelly.

Kevin was able to follow the babies up to the NICU while the obstetrics team worked to complete Shannon’s surgery, and witnessed as teams of doctors, nurses and respiratory therapists scrambled to stabilize each of Emmet and Finn. Early focus was on getting them on automatic respirators, while an initial battery of tests were run and blood samples were drawn so the NICU team could conduct a full assessment. While the last few ultrasounds after the TTTS diagnosis had estimated Baby A, the recipient, to weigh several ounces more than Baby B, the donor, the official birth weights came in at: 680 grams for Emmet; and 680 grams for Finn. The exact same: 1 pound, 8 ounces each. “Identical twins,” one of the nurses said, “It was meant to be.”

Emmet

A bit later that afternoon, as Shannon recovered on the Labor and Delivery floor of Beth Israel, the attending neonatologist came to give the initial report on Emmet and Finn. That initial report seemed cautiously optimistic: both had needed immediate assistance after being born, though neither had needed chest compressions (which, given their size, could have done internal damage to their organs); the NICU team had been successful in placing both the arterial and ventricle intravenous lines into Finn, though had only been able to insert the arterial line into Emmet, and so would likely try to insert a picc line at some point for the ventricle line; Finn would need a blood transfusion (not totally unexpected, as the TTTS donor); and Emmet’s acidity level was a bit high, which they believed was contributing to the fact that they weren’t seeing much spontaneous movement from him. The doctor explained the steps they were taking to deal with each of these issues. “Are they stable?” we asked. “Not at this point, I wouldn’t say that,” came the reply.

Within a few hours, Shannon was moved to the Postpartum floor of the hospital, and we were trying to settle in when the room phone rang at about 8:30 pm. “Are these Emmet’s parents? The doctors asked you to come upstairs to the NICU right away.”

As had been the case on July 13, and July 15, and July 22, and the morning of July 23, the news that evening in the NICU was once again bad. This time, however, it was the worst news of all: Emmet’s heart rate and respiratory rate had suddenly plummeted, and he had only been stabilized by a shot of epinephrine and the administration of chest compressions.

The neonatologist’s update broke our hearts — while Emmet’s vital signs were superficially okay and his acidity level had improved slightly throughout the day, the NICU team had yet to see any real spontaneous movement from him. The neonatologist explained that Emmet’s presentation was rare, that they see their fair share of TTTS recipient micro preemies, but that Emmet’s total lack of movement was unlike anything that she had really seen. She asked some of the more experienced nurses if they had ever seen a baby present quite like this. Days later, after this was all over, she told us that one of the nurses had pulled her aside after that question. “I have seen a few babies like this,” the nurse told her at the time, “but none of them made it. And I wasn’t going to say that in front of the parents.”

As we stood there, trying to process all of this, it happened again at about 9:00 pm: Emmet’s heart rate and respiratory rate dropped, the NICU team tried to stabilize him by increasing his oxygen flow, but ultimately needed to push epinephrine and do chest compressions. When things settled down, the doctor pulled us aside. “There’s a term for what’s happened here,” she said gently. “It’s called ‘coding’.”

The NICU team did everything they could: took x-rays to check the placement of the arterial and ventricle lines to make sure they weren’t the cause of the episodes (they weren’t); adjusted the placement of those lines anyway; performed an EKG, and called in a cardiologist from Children’s Hospital for a second opinion; pushed a dose of bicarbonate, a base, to try to rebalance Emmet’s overly acidic pH level. After all of this, as the doctors were coming to the conclusion that we all desperately wanted to avoid but that seemed increasingly inevitable, Emmet coded a third time at 12:30 am.

Once they had stabilized him again, we knew that there was nothing we could to save him. Irreversible damage was being done by each of these episodes, and we knew he was in pain, and so with the blessing and encouragement of the doctor and nurses there, we did the only thing we felt like we could do: we had him disconnected from all of his wires, and let him snuggle on his mom’s chest. He passed away in our arms at about 1:45 am on Sunday, July 24.

Emmet and Finn

This will take a long time to process, and truthfully, it may be something we never fully process. For now, we have Finn to focus on, as well as Emmet and Finn’s older brother Dermot, who is old enough to have a personality that makes us smile, but young enough that he doesn’t yet understand what’s happened.

We’ll aim to provide periodic updates on Finn, who now carries the torch not just for himself, but for his big brother Emmet. It’s unfair to put such big hopes on such tiny shoulders, but Finn has already shown us how feisty he is, and given the chance, we know he can make us, and Dermot, and especially Emmet, proud.

A few days after all of this, we met with the neonatologist from the NICU that night. She said that as she had struggled to come to grips with what had happened on Saturday night and Sunday morning, and considered how it would impact our family in general and Finn in particular as we go through life, a thought occurred to her.

“Finn and Emmet didn’t just spend 25 weeks together in utero. While everyone else who was in that room during Emmet’s 13 hours of life came and went — there was a change in nursing shift, I was in and out, and even you (Shannon and Kevin) were there for part of Emmet’s time here but not all of it — Finn never left his side. When you tell Finn someday about his twin brother, you can tell him that he was by his brother’s side for his brother’s entire life. And I think that will really mean something to him.”