Choosing Emma: When your Baby Falls between the Cracks of Viability

In the world of prematurity, each hospital sets its own rules of when they will resuscitate and when they won’t.  Some cases aren’t exactly clear cut and the doctors leave the decision to the parents.  Here is one of those stories shared by my friend Rebecca.  Grab a tissue and be prepared to cheer for the amazing Emma and her family.

Two years ago, I had no idea that there were limits to the viability of a baby. Well – I probably knew there were limits, but thankfully had no reason to a) know what those limits were and b)apply them to my own life. And then my water broke at 22 weeks and 3 days gestation.

I knew that waking up in a puddle in the middle of the night wasn’t a good sign. I knew that halfway through a pregnancy probably wasn’t far enough. I knew that when the nurse questioned me four times about EXACTLY HOW FAR ALONG I was it probably wasn’t a good sign. And I knew that immediate transfer by ambulance to a hospital across town with a Level III NICU wasn’t going to be a soothing ride.

I can remember quite vividly looking out the back door of the ambulance as we pulled away and seeing my husband James walking out of the hospital to our car with a plastic bag of my wet clothes and being so scared that something would happen before he caught up with me at the new hospital. I couldn’t fathom, at that time, the decisions that would lay ahead of us regarding this baby kick, kick, kicking like mad in my belly.

To back up a bit, it was on our older daughter Madilyn’s second birthday that we found out I was pregnant again. I had had two early miscarriages in the past, but we had no reason to believe after the 12-week mark that this pregnancy would be anything but normal. And by normal, I assumed I’d gain the SAME 60 POUNDS I had gained with Madilyn. Ice cream and I are BFFs.

Around 17 weeks, I started having intermittent spotting. We had numerous ultrasounds done and no one could find the source of the bleeding. Since it wasn’t affecting the baby we all assumed it was just going to be a nuisance throughout the entire pregnancy. I’d actually seen my OB just hours before my water broke spontaneously. I commented to the input nurse at the hospital that maybe my body had taken me seriously when, as a teenager, I had sworn I’d be done having kids by the time I was thirty (my thirtieth birthday had been two days before).

So here’s the thing – James and I found out pretty quickly that the difference between 22 weeks gestation and 23 weeks gestation is whether or not your baby can be resuscitated when it’s born. At our hospital, babies born at 24 weeks gestation are automatically considered viable. At 23 weeks, it’s up to the parents to decide how to proceed, so a pretty major decision now rested on our ill-equipped shoulders.  We were given some awful facts – at 23 weeks, a baby has only a 2-3% chance of having totally normal development. At 24 weeks, that increases to 15%. The list of potential problems was staggering. Did we want to have the steroid shots to help improve lung development at the soonest available opportunity, or wait until I was closer to 24 weeks? What did we “feel” like baby would show up? Were we prepared for a long stay in the NICU with potentially devastating results?  Did we think our baby was strong enough to survive at 23 weeks?

Sitting there listening to all the facts and figures was shocking. In 6 hours, we went from assuming I’d have a normal, 40-week pregnancy to deciding what kind of life-saving measures we wanted the staff to take on our baby’s behalf. If I went in to labor in the next three days, they would simply place her in our arms and we could name her and hold her and love on her for as long as she was with us. On day four, the decisions were up to us.  Did we want to let baby go at 23 weeks and just hold her when she was delivered? Did we want the staff to pull out all the stops to keep her alive, and to what extent? Heroic measures? How long should they try if she was failing? What if things were okay at first but not later? This baby was kicking like mad (in far below the “ok” amount of amniotic fluid, which was still running out), but the ultrasound suggested that she might be slightly bigger than expected…which was the open door we needed. But it’s not like James or I are extraordinary people (we are, in fact, horribly average) – how tough was this kid gonna be??

Turns out: pretty damn tough. Despite being born at 23 weeks and 1 day gestation, littleemma3 Emma Sue was nicknamed “Feisty” within the first hour of her birth and lived up to her name time and time again. James and I had decided, given all the information we could gather at the time, that with our personal beliefs and the support of our families we were going to give this kid every opportunity we could. We also hoped and prayed that if we were making the wrong choice, it would become clear to us and we’d be able to adjust accordingly. Thankfully, we never had to make that heartbreaking choice. Our doctors supported us 100% and never questioned our decision (for which I am unendingly grateful). Our 133-day NICU stay had its fair share of tougher than tough times, but Emma pulled through over and over again.

micro preemie outcomesAnd now? Now we can’t even fathom our life without this kiddo in it. She truly knows how to light up a room and brings a smile to the faces of everyone we encounter. She fights with her big sister, says “no” and “mine” more often than not, and screams when she doesn’t get her way – just like most two-year-olds. The feistiness that kept her alive two years ago keeps James and me on our toes. Every. single. day.

Parents make decisions on behalf of their kids all the time and we made our choice based on the information we had in front of us at the time. James and I continue to make decisions that way (even though I’d MUCH rather have that crystal ball to tell me how things turn out – so much easier to know that you’re on the right path!). I continually look at Emma and think – what if I hadn’t gotten the steroid shots at the first available opportunity? What if she had shown up when my water broke, instead of five days later? Although time starts to heal those wounds, the week between my birthday and her birthday will always be shadowed, despite the fact that it’s the highlight of the summer. I’ll never forget being on bed rest with the huge elephant in the room – when will this baby show up? Waiting for viability will always be remembered as the longest four days of our lives.

emmabecca

 

Thank you, Becca for sharing your story.  I can only disagree with one thing.  You and James are anything but ordinary!  I’m proud to know and be your friend.