Camber: Sarah’s Story: Peace Like a River

Our daughter Sarah lived only 4 days. Though her life was brief, it was also beautiful, and it was miraculous.

Her story starts back in early January 2014 when I found out I was pregnant. This was confusing to us because I hadn’t done IVF four times like we did with my oldest daughter, M. We took 7 pregnancy tests, just to be sure. They were all positive.

My little miracle pregnancy progressed very normally until about 32 weeks, when I suddenly doubled in size over about 2 weeks.

I wondered idly if I had extra amniotic fluid or something that made me get so big so fast. My husband, Isaac, pointed out that I was supposed to get bigger during the 3rd trimester.

During my 34-week check, a quick ultrasound to check Sarah’s position (breech, with her head up by my ribs) also showed that there was WAY too much amniotic fluid surrounding her. The next day we went to see a perinatologist (a pregnancy specialist) for what I thought would be a quick chat about trying to get Sarah to turn before the delivery.

Our quick little appointment turned into a 2 1/2 hour doozy of a meeting with the doctor.

The bottom line: there was too much amniotic fluid because Sarah had something very wrong with her brain, and she wasn’t swallowing the fluid like she should.

Bless that doctor, he took a long time with us, explained everything very thoroughly, and emphasized a few things:

1) The extent of her brain damage may be anywhere from mild to profound. He could not tell in much detail with just an ultrasound. His instinct, however, was that she would be more likely on the severe end of the spectrum.

2) We needed to deliver at the bigger hospital that was slightly further away. It has a higher-level neonatal ICU and he wanted us there as a precaution.

3) I should expect an early delivery. The extra fluid would trick my body into thinking it was more pregnant than it actually was. (In fact, I was already having contractions by that point).

4) He recommended further testing, and we scheduled a fetal MRI for the next week, followed by possible genetic testing.

The doctor was dead-on about #1-3.

I’ll admit, that appointment was overwhelming. I’d had a very healthy, normal pregnancy up to that point, and of all the problems she could have with her little body, neurological problems were what I feared the most.

As it happened, Isaac and I had planned a weekend trip for just the two of us at a local ski resort starting that evening. We went directly from the appointment to drop M off with some family, then went on our trip. This allowed us a weekend together of (short) nature walks, breakfasts overlooking the river, rides on the ski lifts, and lots of time to talk about Sarah. We told our immediate family members, but with such limited information we weren’t sure what to expect. We prepared ourselves to raise a mentally handicapped daughter.

That weekend we happened to listen to a talk by one of the leaders of our church, Dieter Uchtdorf, titled “Grateful in any circumstances”. He said, beautifully, “those who set aside the bottle of bitterness and lift instead the goblet of gratitude can find a purifying drink of healing, peace, and understanding.”

Those words set the tone for the rest of the week. We decided to be grateful for Sarah, and to love her and accept her regardless of the extent of her problems. We decided to trust God, believing that He was in control.

The timing of that ultrasound, the meeting with the specialist, and our little weekend trip proved to be miraculous.

Sunday we returned from our trip, and Monday, 35 weeks along, I started having contractions in earnest. They continued, maddeningly, on and off for two days, until Tuesday evening, when they became strong enough that I couldn’t walk around any more. I finally consented to have Isaac call my doctor (who is also my uncle), who told us to go to the hospital. I went grudgingly, knowing that the contractions were just going to peter out again, as they’d been doing the last 2 days. Sure enough, they subsided almost completely on the way to the hospital.

I felt super frustrated with my body, and we decided to just walk around the hospital for a few minutes and then drive home if the contractions didn’t start up again. As we walked toward the entrance, someone greeted us. It turned out to be my uncle’s partner, Dr. C., who was going to do my delivery since my uncle couldn’t deliver at the bigger hospital. Now I just felt embarrassed that this doctor had driven down to the hospital to check me when my contractions had petered out again, but there was no turning around to go home at this point.

It turns out that was a very fortuitous encounter, because when Dr. C checked me, his eyes grew wide and he said, “You’re at a 9. We need to GO.” Sarah was breech, and we hurried to do a C-section before she came out on her own and, potentially, got stuck.

A flurry of activity followed–Isaac in white suit and blue booties, calling/texting family and doctors, IV, spinal block, drapes, uncontrollable shaking, nerves, warm blankets, Isaac’s hand in mine. Baby.

I barely knew she was out, since I couldn’t see or hear her. A team started working on her right away in an adjoining room, and Isaac went back and forth from her to me, giving me updates. Not breathing on her own, but beautiful. I wouldn’t see her for 3 more hours, when we dragged my barely-working legs into a wheelchair and went upstairs to the NICU to visit.

It was evident from the beginning that something was wrong. Not only could Sarah not breathe on her own–couldn’t even keep her own airway open–but she lacked all the normal newborn reflexes, including a gag reflex. Bad news kept pouring in. Her movements were erratic, resembling mini-seizures. The electrical activity in her brain was abnormal. The nerves in her eyes were malformed, meaning she was likely blind. The ventricles in her brain were too big. An MRI of her brain showed a missing corpus callosum, missing sections of the hypothalamus, and general lack of development.

Despite all this, on the outside, she was beautiful. She even had a head of adorable light brown hair. Her perfect little features belied all the neurological problems she had. She never cried, since she was on a ventilator, and never seemed to be in distress.

We held her for the first time about 24 hours after her birth. Aaaaaand…we cried. A lot.

Because, despite everything, we were in love.

Thursday evening we had the Meeting. All the needed tests had been done, and we met with our wonderful neonatologist, Dr. M, who had spent much of the day discussing Sarah’s case with other doctors, reading the MRI report, and researching her case. She explained the following:

1) The problems in Sarah’s brain looked more consistent with some kind of global injury rather than a malformation–meaning some kind of damage had occurred, rather than a genetic or chromosomal defect.

2) The damage probably happened sometime during the second trimester, halting the development of her brain from that point onward.

3) Ultimately, Sarah’s condition was not survivable. The damage had been present for long enough that there was no hope for recovery of function from this point onward. And unable to breathe, swallow, see, hear, or move well on her own, she would have poor quality of life should we choose to prolong her life.

I think Dr. M, who had been present at Sarah’s birth, knew pretty much from the beginning what the outcome would be. She had determined from the beginning to give us the best experience with Sarah possible, while hinting at the severity of what she saw and never giving us false hope.

We knew this was coming, and hoped and prayed that the decision we would have to make that night would feel clear. It did.

In the end, we all agreed that taking Sarah off the ventilator and allowing her to pass away was the best course of action. I was fine in this conversation up until this point. Then I started plowing through the tissues. Because obviously I wasn’t going to not be there while she died, but that meant I’d have to be there when she died. It was a task that felt utterly overwhelming.

We decided that Saturday would be the day. My family all drove into town on Friday; Isaac’s family is already local. I was discharged from the hospital that day as well. I tried not to dwell too much on the thought that I was leaving the hospital without my daughter, while I listened to other babies crying in rooms near mine. I was once that mom. I’d had M, she was healthy, and I brought her home with me. I had that experience. This time I was going to have a different experience.

Friday night we drove back to the hospital for one final visit with Sarah. Her nurse, knowing that I’m also a nurse, offered to let me do some of Sarah’s cares for the evening. So I awkwardly took her temperature (keep in mind, I always took care of adults, never newborns), changed her diaper, weighed her, and gave her a bath. Isaac and I both held her for a long time as well.

That night is one of my best memories of Sarah. One of the hardest things about having a baby in the NICU is that someone else is generally your child’s caregiver. I showed up for visits, but I was never the one taking care of her. I longed to just feel like her mom. That night I had my chance. Also, something changed in us during our time with Sarah that night. Usually visiting her just made us sad (my personal habit was to burst into tears every time I saw her), but during this evening, the grief dissolved into peace. I started to think that maybe, maybe, Saturday would be okay.

There’s something else about Sarah that I find hard to explain. There was a spirit about her. She didn’t feel like less of a person to me because of her neurological problems. Rather, it felt like she was too good, too pure to stay here long. I am convinced that she was aware of us, despite her sensory limitations.

Saturday morning we dressed Sarah in her beautiful white blessing dress, after disconnecting her from all tubes except the ventilator. The NICU had a large room set aside for our purposes that day, where we met our families. Isaac gave Sarah a name and a blessing (a tradition in our church), and then all of our immediate family members took turns holding her.

A photographer drove over an hour each way to volunteer her time to take beautiful pictures of us with Sarah both before and after we took her off the ventilator (there’s a national organization of photographers that volunteer for things like this). Bless her.

Then everyone left us alone, except a few hospital staff, and the time came that we’d initially been dreading. At first, when we decided to take Sarah off the ventilator and let her pass away, that seemed like the most traumatizing thing I could possibly imagine. That morning, though, a feeling of peace permeated the room. I almost felt a sense of anticipation, because we were sending her home. It felt right.

One of our fears was that she would linger for hours. She had been taking a lot of breaths on her own, beyond the help she received from the ventilator. Dr. M prepared us for the possibility that, if she kept breathing well on her own, we might have to wait for her to be overcome by her secretions before she would succumb. We sedated her slightly beforehand so she wouldn’t struggle too much or become uncomfortable with the process. But, as it turned out, she stopped breathing almost right away. She didn’t have enough strength to keep her own airway open without the ventilator in place.

It took maybe 45 minutes to an hour for her heart to stop completely, and during that time we held her, admired her little face without the ventilator, and told her we love her. By the way, I thought my tear ducts would have dried out by then, after the week we’d had, but those things just kept producing! Remarkable.

What I remember most, though, is the feeling of peace. Nothing about the experience seemed horrible. Sarah’s passing was beautiful and serene, as was her life. Reflecting back over our time with her, it felt like a privilege. Back to the gratitude thing–I felt profoundly grateful for our time with her, and to God for blessing our family so much with such a beautiful person. In our church, we believe that families are forever. That belief became very real to me as she left us that day. I felt–and feel–an assurance that we will see her again.

I don’t want to downplay the grief or the sadness of sending this girl back home so soon. But Sarah’s life was a string of miracles, and the last one was this: that day, we left the hospital smiling.

6 months after Sarah was born, I wrote the following about life after loss:

Sarah would be 6 months old now.

I can’t bring myself to say those words out loud. I kind of choke on them. 6 months seems like a weird milestone to mourn. But this also seems a fitting time to share some thoughts about life after loss. (Here’s her story if you need a refresher).

The dreaded question

First, there’s the question I hate: “How many kids do you have?”

It’s really incredible how quickly I can break out in a cold sweat. Often I panic and say “one.” It seems to blurt out of my mouth before I can stop it.

It’s the easy answer but it’s the wrong one. I am a mother of 2. One of those 2 is just really, really easy to take care of right now.

If I do manage to answer “two” I pray they won’t ask the natural follow-up question: “How old are they?” Poor souls. I have to tell them the truth, and I wish I could warn them first that things are about to get awkward.

The grief bucket

Then there’s grief, Mr. Unpredictable. Grief isn’t like I thought at all. I thought I would grieve a lot at first and then gradually just heal and move on, in a tidy linear fashion. It doesn’t feel like that. It feels like a bucket that slowly fills up and then spills over in a fresh wave of sadness. In between spills I go about daily life and I lead a happy, full life. Over time the bucket does seem to fill up more slowly, but once it spills over the feelings are just as fresh as day 1.

Known and Unknown

I have to admit there’s some fear wrapped up in the question, “What about the next?” After years of infertility and two miracle pregnancies, will I ever be pregnant again? And should I be that lucky, will my baby survive?

I should back up and explain that we chose to have an autopsy done on Sarah. She had a condition called “multicystic encephalomalacia”. That’s a fancy term for extensive damage to the brain from massive oxygen depletion, due to infection or circulatory problems.

Put in plain terms, the most likely scenario is that, sometime during my second trimester, Sarah’s cord got kinked or twisted, blocking blood flow for long enough to cause irreversible damage to her brain, but not long enough for her to pass away in utero. She had been perfect at the 20-week ultrasound.

Thus, as far as we know, there’s no greater risk of this happening to us again as there is of it happening to anyone.

I’m still nervous.

[Author’s note: I was, miraculously, able to conceive again, and while that baby was born healthy it was a very difficult pregnancy emotionally.]

Irony…or poetry?

This is probably an appropriate time to mention something else about Sarah. Her name was Sarah Emily, in honor of Isaac’s twin sisters, Sarah and Emily, who passed away as babies. They had a shared blood supply, and due to complications of this, Emily was stillborn and Sarah, similar to our Sarah, had severe brain damage from the lack of blood flow. She lived about 7 months and then passed away as well.

We really felt like Sarah Emily was the right name for our daughter when we picked it after the gender ultrasound. It seemed so redemptive to imagine her living the full life they missed and honoring their memory in that way.

Instead, in one of life’s ironies, we watched our Sarah follow a similar path as her sweet aunts. Perhaps this would be an opportunity to let bitterness in. But I see it differently. I think it’s fitting that such pure, beautiful spirits as Sarah and Emily would have a namesake equally as pure and beautiful. Isaac’s mom says she likes to picture the three of them up in heaven, dear friends, and jumping on beds like teenagers at a slumber party.

Closing the door on bitterness

I picture Bitterness as one of those door-to-door salespeople trying to shove his foot in my door while I’ve got my back against it, trying to force it closed. I can’t dwell on other people’s large families or the healthy babies born around the same time as Sarah. I can’t dwell on the seeming unfairness of struggling with infertility and then losing a child.

Despite it all, though, I regard Sarah’s life and passing as one of the most beautiful experiences of my life. It was a privilege to be in her presence, to be her mother, to give her life and love her, and then to send her peacefully back home.

I remain convinced that, if her time here needed to be short, she was taken in the gentlest way possible. There’s no way to send a child home without grief unless you don’t love her–a rare scenario indeed. But she lived and died peacefully, with little distress and almost no trauma or pain. Also a rare scenario. We had a little notice that something was wrong but not too much. Choosing to take her off the ventilator didn’t feel like a dilemma–we all agreed it was the best thing for her. All these things softened the experience. And through it I came to know God in a way that would otherwise be impossible. I have felt peace that didn’t–couldn’t–come from me.

That’s how I keep the door (mostly) closed.

Different

I am a different person now. More compassionate, I hope. Better educated on grief. Better equipped to empathize. I have received so much kindness that I feel eager to give back where I can.

I used to see other parents losing children with health problems and think it mattered less to lose a “damaged” child than a normal one.

Here’s the truth–I loved (and love) Sarah just as much as Mary. It’s remarkable, really, since our time together was so short. That beautiful girl wasn’t damaged goods. But the gift her health problems gave me was the ability to let go with fewer regrets. On days when I try to imagine life with her here, a chubby, laughing 6-month-old that’s sitting up and grabbing my hair and learning to eat solids, I remember she wouldn’t be doing those things. I can’t wish she were here if it means keeping the body she came in.

I would have never chosen the past 6 months to happen as they did. But I’m forever grateful they happened anyway.