Balancing fear and faith when pregnancy doesn’t go as planned

When I started writing Family Forward, I was excited to share an honest look at what it means to be an LGBTQ family today — the good and the bad, the mundane and the exciting, all through a realistic lens. So, even though the topic that follows is tough to write about, it’s a reality that far too many parents of all identities experience but one that I think more people need to talk openly about. 

So, here it is: right now, at about six months’ pregnant, we’re unsure whether one of our twins is going to make it. The odds aren’t in our favor and we’re struggling pretty hard between trying to have faith that our little girl could defeat those odds and giving in to the fear of the worst. Here’s how we got here: 

When pregnancy gets complicated

On Aug. 13, I was scheduled for my first anatomy scan, where a tech measures the baby from top to bottom using ultrasound, a tedious process that takes over an hour for twins. We were already on edge because two weeks previously we had gotten an “atypical” genetic blood test we had only taken to find out the babies’ sexes (at the time of this anatomy scan, we were awaiting the results of a repeat genetic test to find out if either of the babies indeed had a chromosomal abnormality). 

We calmed a bit during the scan after seeing both babies squirming and their strong heartbeats. The technician covertly discovered the sexes and wrote them on a piece of paper in a sealed envelope, which we were excitedly speculating on when the doctor came in (and which we didn’t open for six weeks given the upheaval but eventually learned we’re having a boy and a girl), and we immediately knew there was an issue. She shared that Baby B was measuring two weeks behind A, a discrepancy of more than 30% in growth (twins should be within 10% of one another, she explained) and also had “echogenic” bowels, both of which could be markers for a chromosomal problem or a condition called intrauterine growth restriction (IUGR). Off to the car we went in tears, the first of many walks like that we’ve taken in the last few weeks. 

Over the coming days, we had a series of calls with our physicians and genetic counselors and decided to go ahead with a boatload of new bloodwork and the amniocentesis they were advising us to schedule. On Aug. 23, I underwent that procedure, in which the doctor withdrew amniotic fluid from each baby’s sac through a needle inserted in my stomach. While it was an immensely painful experience, it was even more so emotionally challenging; I cried the entire time, knowing that apart from the inherent risks associated with the procedure, we could be gearing up for even more bad news. 

After about 10 days of furiously checking my phone, I finally started getting the calls that each of the tests and, ultimately, the amnio were normal. I figured, maybe we just had a small baby! Excitement back on. 

Then on Sept. 13, at my 20-week in-depth ultrasound, another doctor came in at the end with that same grim expression the first one wore. This time around, there were words like “disrupted blood flow” and “fetal loss” being thrown around, which were hard to concentrate on as I stared at a spot above the doctor’s head, trying not to let out the sobs Ashlee and I again shared on our way to the car after the appointment. 

It turned out Baby B’s growth was even further behind and the Doppler test they did to measure blood flow showed abnormalities, prompting the diagnosis of early onset, severe IUGR, which I’ve learned refers to babies who are below the 10th percentile for growth. The risk for prenatal loss is high, as are the chances of premature birth and impairments if the baby survives. The doctors told us there wasn’t much that could be done other than “waiting and seeing” (essentially, whether the baby’s growth turned around or we lost that twin in utero by our next scans). 

Wallowing is a good word for what Ashlee and I did over the next 24 hours. Lots of crying, lots of ordering unhealthy food, lots of “why us?” comments. But we quickly knew that approach wasn’t going to be sustainable. I called Children’s Hospital of Philadelphia the next day, thinking that at least going for a second opinion would make us feel like we were doing something other than waiting for more bad news.

CHOP was able to get me in for their full-day consultation the following day but, after eight solid hours of ultrasounds, echocardiograms and more, they didn’t have much more encouraging news. Baby B was only measuring 7 ounces—less than the 2nd percentile—and A was 13. There are a ton of causes of IUGR, and the doctors surmised that this particular issue was stemming from the inopportune placement of B’s placenta and umbilical cord in my uterus; that twin just, unfortunately, isn’t in a good spot to get the needed nutrients and oxygen. Apart from the disrupted blood flow, they found “brain sparing,” a baby’s instinctive mechanism for protecting brain function when faced with depleted oxygen. 

Off to the car in tears again. That appointment at CHOP was pretty sobering, though for any parent in a similar situation, I would highly recommend getting a second opinion. Knowing your baby is in trouble and there’s nothing you can do is terrifying, but seeking all the information and reassurance you can provides some semblance of peace of mind. While it wasn’t the news we wanted, it was the dose of reality we needed to realize that we had to start figuring out how to cope with what could be coming our way.

Faith vs. fear

As the CHOP docs put it, we are facing three options: The best is that Baby B could keep growing incrementally without any further deterioration in the blood flow or other functioning. But, if deterioration does happen, we will have to decide whether to intervene and deliver both twins very pre-term—even though early on B may only have a 30-50% shot at making it, with A’s chances at about 50-70%, though both could face severe impairments; or at that point, we could choose not to intervene and let Baby B go to give A the best chance to carry closer to term. The third avenue is that we would learn that Baby B was lost in utero on one of my now-weekly scans and I would have to continue to carry both to get A as close to full-term as possible.

So, it’s with literally baited breath we’ve gone to the high-risk specialist every Monday since, knots in our stomach until we see the two telltale tiny hearts pumping on the screen. Sonographers are rather skilled at keeping a poker face: At week 22, we were told Baby B had no real change in blood flow, for better or worse, so we were spared a doctor visit and headed to the car almost gleeful that, for the first time in weeks, we didn’t leave the office crying. The next week, the sonographer brought in the doctor to share that Baby B had developed fluid on the brain and belly, blood flow had gotten worse and she’d only gone from 7 ounces to 11—whereas her overachieving brother jumped from 13 ounces to 24—prompting the doctor to awkwardly label ours “not a good situation.” 

I’ve struggled really acutely in the last couple weeks with coming to terms with this “situation.” After the CHOP visit, I was ready to throw in the towel. I felt like I needed to accept our daughter wasn’t going to make it and that, the more realistic I was about that, the better for everyone. One Sunday morning, Ashlee told me she had found an IUGR support group on Facebook and was sharing all these stats and pictures of healthy kids that parents had posted. I wanted none of it because I wanted to figure out how to make peace with the fact that this wasn’t going to happen for us. That entire day, however, I sensed the world was trying to convince me to have hope. 

Neither Ashlee nor I are religious folks, but we had Jackson baptized in a local, super-awesome (inclusive and progressive!) Christian community, and we felt like this particular Sunday was as good as any to make a return trip. The theme of that day’s sermon? When life gets too tough, you have to have hope. It was a word that truly followed me that entire day, in the church program, on TV shows — everywhere. Finally, I gave in and checked out the Facebook group and started seeing that, yes, there are many other parents in our position who’ve welcomed babies who are eventually healthy. Maybe that could be us? I wondered. 

That spark of hope has been what’s driving us from one Monday appointment to the next, celebrating even her tiny growth and the fact that she made it another week. Having hope does make that seemingly inevitable blow of weekly bad news all the worse but giving into fear entirely doesn’t seem fair to our child. Even if all we can do is educate ourselves about what she’s facing, advocate for her and just cheer her on — I at least feel like we’re trying to live up to being her parents, in case this is the only time we have to do that. 

While this experience is entirely new to us, I am cognizant that so many parents are dealing with the pain of a child who’s in trouble every day — which puts me in awe of those who have kept it up for so long. We hope to have the strength to learn how to straddle that line between faith and fear; while it’s no easy feat, I think talking about this struggle can help you take charge of whatever fight you’re facing. We have zero control over what’s going to happen but we can choose how we approach each day, and we’re trying to do that with our babies — Jackson, along with our newly named August Joseph and Avery Faith — at the forefront.