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Lauren’s Story: Bea-lieving in Bea

April 30th, 2022  | HIElights of Hope

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Name: Lauren Witchard

Location: Adelaide Hills, Australia

Child’s Birth Year: 2020

Keywords: New to HIE, Writing, Breastfeeding Process, Villitis

Lauren and her husband live in Mount Barker, a town just out of Adelaide in South Australia, with their two cocker spaniels, their bunny rabbit, and Beatrix, their daughter with HIE. Lauren teaches English, media studies and history to year 11 and year 12 high school students, as well as lectures to university students who are pursuing careers as English teachers. Lauren’s husband is a paramedic, and, because of his job, he is away from home for two weeks every month. Lauren entered the world of motherhood a little later on in life, but she was so excited to finally welcome a child into the family.

Before Bea, Lauren and her husband believed that, if they found out their child would have significant disabilities, they would terminate the pregnancy. Neither thought they were capable of being the type of parents who were “resilient” enough to handle the added stressors of raising a medically complex child. Though they didn’t know it at the time, they would soon discover just how wrong they were. They learned that the reason they couldn’t fathom being able to handle it was because they’d never been put in a position where they had to find out.

On the whole, Lauren’s actual pregnancy was a dream scenario. She had no morning sickness, and she just loved being pregnant. Up until thirty-four weeks, there were no major concerns, other than a potential risk of the baby having trisomy 18, which was soon dismissed. But in those last six weeks of the pregnancy, the doctors noticed that Lauren’s fundal height—a measure of the size of the uterus used to assess fetal growth—continued to drop slightly. To be on the safe side, they did a fetal growth scan. The scan showed that, although Bea was on the smaller side, she was still fine and receiving adequate blood flow.

Soon after, Lauren started noticing decreased fetal movement. But, again, she was told by many that this was natural near the end of the pregnancy. Lauren had been seeing the same GP obstetrician throughout her pregnancy up until that point. At thirty-eight weeks, she went to the local hospital she would be delivering at to meet a different obstetrician for the first time. When this new doctor asked her if her movements were normal, Lauren—who had been reassured that there was nothing to worry about—responded with “apparently.”

Two days after the appointment, however, Lauren started bleeding as she was going to the bathroom to get ready before bed. Because Lauren was now bleeding, on top of feeling close to no movements for the past two days, her husband took her back to the hospital to get checked out.

At the hospital, the monitor showed that, even though Lauren wasn’t in labor, Bea was in distress. Luckily, the GP obstetrician who had been following Lauren throughout the majority of her pregnancy was on call that night, so she was able to take Lauren in for an emergency C-section right away. But, as Lauren was being wheeled to the operating room, the doctor she had met two days prior said to her, “I thought you said the movements were normal.” In that moment, Lauren will never forget how small and upset she felt. The thoughts of guilt and self-contempt were unbearable: Why hadn’t she known better? Why wasn’t she more concerned when Bea stopped moving? Was it her who had caused Bea’s distress? How was it possible that she was already failing as a mum before her baby was even born?

At the same time, Lauren’s husband was also struggling immensely. As a paramedic himself, he was painfully aware of all the medical terminology that came out of the doctors’ mouths. So, when they mentioned that MedSTAR—South Australia’s medical emergency retrieval service—would need to come to transfer Bea to a nearby hospital with a neonatal facility, he knew just how dire the situation was.

When Bea was finally born, the gravity of it all was confirmed. During the C-section, the doctors noticed there was a significant amount of in utero meconium, an indication that Bea had been under stress due to a lack of blood and oxygen supply. The placenta also had large patches of infarctions. Bea’s initial Apgar score was 1, but, luckily, in the next five to ten minutes, she improved significantly. Yet, in place of a cry, there was just eerie silence. Once MedSTAR arrived soon afterward, they started passively cooling Bea. Lauren went in a separate ambulance to the new hospital. Upon arrival, she was assigned to a private room in the maternity ward, located one floor above the NICU. To have a private room in a large public facility was unheard of. It wasn’t until much later that Lauren realized there was a reason she was receiving all this special treatment—it meant that the doctors thought Bea’s condition was as serious as it could get.

Since Bea was born in the middle of the night, Lauren had to wait until morning to get some answers. When a doctor came to her room and began explaining Bea’s HIE diagnosis, Lauren still couldn’t wrap her head around what had actually happened. After the delivery, she genuinely believed that the C-section had prevented the fetal distress from progressing, as well as stopped anything bad from happening to Bea. It never occurred to Lauren that there were going to be long-term effects from the distress. When the doctor explained that Bea had seizures, Lauren thought of her friend’s child with epilepsy, who was both nonverbal and nonmobile. Lauren felt her heart begin to break, as she had always thought of seizures as being bad. She didn’t realize that, while the seizures were bad, the main issue at hand was what had led to the seizures in the first place. She didn’t realize that the seizures were a symptom, not the actual problem itself.

During the first two days of cooling, Bea experienced multiple seizures, but, luckily, they were eventually able to be controlled with medication. On day five, Lauren was finally able to hold Bea. One of the most difficult things for Lauren to come to terms with was that all those expectations she originally held, particularly as a first-time mum, of having that perfect birth and magical first hold were not her reality. The reality was that Bea was held by all these doctors, nurses, and emergency responders before Lauren. The reality was that Bea would not be fully breastfed right away but would receive breast milk through an NG-tube for weeks afterward. But as Lauren held Bea for the first time, she tried her best to quiet all those thoughts of what she had missed out on, instead appreciating what was right in front of her eyes—her resilient, beautiful daughter, who she would love no matter what.

That same day, Bea received an MRI. The results showed that most areas of her brain had been affected, so the damage was considered global. The most significant damage was to the posterior of the brain, which the doctors said was unusual in an HIE presentation. They also told Lauren and her husband that they presumed the oxygen deprivation was not due to birth trauma but had happened earlier. Two days later, the pathology results confirmed this presumption. It turns out that Lauren had villitis, which is when the chorionic villi, which are essential in nutrient and gas exchange between mum and baby, become inflamed. The GP obstetrician later told Lauren that, in her entire career, she had only seen two previous cases of villitis, both of which ended in stillbirth. Although finding out how close Bea had been to death was terrifying, it also made Lauren and her husband even more grateful that she was here with them. Even if she would go on to have long-term effects from the HIE, the fact that Bea was still in this world, fighting every day, was a miracle.

After those initial few days of the cooling and getting the MRI results, Bea seemed to do well. Her tone was on the hypotonic end of the spectrum, but otherwise wasn’t too concerning. However, Bea ended up staying at the hospital for a month was because she needed to be on an NG-tube due to a weak suck and swallow. At that point, Lauren had already given up so much—her natural vaginal delivery, the first hold right after birth, and the ability to return home from the hospital after a few days. So, when the speech pathologist came to Lauren to prepare her for the possibility that Bea might not be strong enough to suck and swallow effectively, Lauren was absolutely devastated. She was not ready to miss out on the experience of breastfeeding as well. It took Lauren months to realize that an inability to breastfeed isn’t a reflection on the mum, or on the doctors. Sometimes, an injury means that a baby can’t physically do it. But, back then, Lauren was convinced she would make it work, that she would at least retain that sense of normalcy. Luckily, that same afternoon, after the speech pathologist expressed her doubts, Bea productively sucked for the first time. By the time she was six weeks old, Bea was receiving all her nutrition exclusively through breastfeeding. The journey to get there, however, took a huge toll on Lauren emotionally.

The neonatal ward preached the importance of breastfeeding. Yet, the feeding schedules, open layouts, and the distance to the hospital made it challenging to establish good breastfeeding practices. Even though Lauren was the mum, she felt like an accessory piece, like she had to constantly ask for permission to do anything with her own child. Having to pass that trust over to people who were initially strangers was strange. Adding breastfeeding into the mix oftentimes led to Lauren feeling even more powerless. Lauren had to commute to the hospital from her house, which was forty-five minutes away, constantly racing to make it on time for Bea’s feeds every three hours. But sometimes—due to miscommunication during shift changes or because Bea began to demand a little earlier as she improved—Lauren would arrive, only to see a nurse already feeding Bea via a bottle or NG-tube. It was frustrating, trying so hard to keep a consistent breastfeeding routine, while simultaneously having her values as a mum placed on the back burner.

Just when it seemed like Bea would be stuck in the hospital forever, the NG-tube finally came out on day twenty-eight. Before Bea was to be discharged, the doctors wanted Lauren to stay overnight, during a full twenty-four-hour feeding cycle, to see how Bea handled being exclusively breastfed. Lauren remembers how tired Bea was and how mentally drained she was herself. Lauren was beside herself, as they were so close to finally going home. She put an enormous amount of pressure on both herself and Bea to pass that final hurdle. In the end, they were finally able to leave on Valentine’s Day, two days after the tube came out.

Even though the hospital was stressful and disempowering at times, Lauren did appreciate all the emotional support she received from the staff and programs. The neonatal doctors at the hospital were the gentlest, loveliest people, who took the time to know every patient and family member by name. They asked Lauren and her husband how they were doing and if there was anything they needed. There was also a social worker who worked closely with parents on the ward. Lauren would definitely recommend that other HIE parents meet with a hospital social worker or counselor, even if it’s just for a brief chat over a cup of tea. They truly are amazing resources. Even if you don’t think you need extra support right now, if things ever go south down the line, you already have that pre-established relationship to fall back on.

In addition, Lauren is so grateful for the Stella Bella Little Stars Beads program. Each week, nurses and parents whose children had been in the NICU for over a week came together to bond and to add to a string of beads. A unique bead corresponded to each medical procedure that a child had gone through that week. So, as the hospital stay went on, Lauren had a tangible, expanding object that became a symbol of pride and fortitude for all the obstacles Bea had overcome. It was also a brilliantly powerful way for NICU families to connect with one another through storytelling. Through the program, Lauren was able to form strong friendships with fellow NICU mums she is still in touch with to this day. To have that local network of support from parents who understand some of what she has gone through has been invaluable.

For the first couple weeks after discharge, life with Bea was utter bliss. Having her little family all together in the comfort of the home environment, Lauren finally felt like a real mum. Not just a mum watching from the sidelines, but a mum who was fully engaged and in control. Of course, she still feared what might come next. But, in those days, all she could do was wait and see, for the issues that Bea would develop later down the line weren’t apparent yet. The pandemic hit soon after, which was certainly a blessing in disguise. It gave Lauren an excuse to hibernate, without a bombardment of visitors, giving her time to recuperate and make up for lost time with her daughter.

Because the COVID-19 cases were not as high where they lived in Australia, Bea was still able to go to all her early intervention sessions and follow-up appointments in person. For the first four months, aside from minor issues with her gross motor skills and her cortical thumbs, Bea was doing better than anyone could have anticipated. Even though the MRI had shown that her occipital lobe was damaged, Bea didn’t seem to have any trouble with her vision.

It wasn’t until Bea was six months old that Lauren noticed tiny, weird signs of activity, reminiscent of infantile spasms (IS). Lauren was never told to watch out for IS by any of Bea’s providers, but, because of the videos posted in the Hope for HIE parent support forum, Lauren was aware of what to look out for. Upon receiving an EEG, Bea was diagnosed with IS at seven months old. After two months of basically no improvement with the IS, Lauren took Bea to see a new neurologist, who told them that the initial treatment approach had not been appropriate. It was heartbreaking for Lauren to hear that her little girl had been suffering from essentially uncontrolled and untreated seizures for two months. The new neurologist immediately started Bea on the proper steroid medication, adding topiramate a little later on. Luckily, the new treatment approach was successful in managing Bea’s IS, but, because of that two-month gap, Bea’s development had regressed quite a bit.

Now, Bea has made quite tremendous progress since her bout with IS. She does have a global developmental delay, but she’s only estimated to be a few months delayed across the board. When Bea was three months old, the doctors predicted that she would have severe spastic quadriplegic cerebral palsy. But, although she was formally diagnosed, her cerebral palsy is mild and of the hypotonic kind. Bea’s gait is affected by her CP, but otherwise, developmentally her gross motor skills are now relatively age-appropriate. Her speech and communication skills are still significantly delayed, but she says over thirty words, and loves drawing, dancing, and interacting with others.

Although, as time unravels, Bea is certainly facing more long-term effects than Lauren had initially hoped for, in the grand scheme of things, she is doing amazing. None of the providers ever fathomed that Bea would be able to walk independently. Yet, she is now walking confidently, and she has recently begun jumping from standing, as well as climbing her learning tower.

In terms of her personality, Bea is a happy, stubborn, determined, and social girl. Even though Lauren and her husband are both introverted, Bea somehow ended up being their enthusiastic little extrovert. Each day, Lauren is just in awe of the immeasurable drive Bea has. And even though this unique parenting experience has almost broken Lauren, it has also very much been what has healed her. Especially in the early days, Lauren felt huge amounts of grief, fear, and doubt in her ability to cope with this new and unexpected life. But, in those moments where all she wanted to do was curl up in a ball and cry, Lauren reminded herself why it is all worth it—because Bea is undeniably worth fighting for. And, as Bea’s primary caretaker, she has no choice but to keep pushing forward.

As she has forged ahead, Lauren has learned so much. She has learned that, just because what she initially hoped for—for Bea to be that child with HIE who doesn’t experience any long-term effects—didn’t come to fruition, that doesn’t mean that hope is gone altogether. Hope isn’t some static entity, but a constantly morphing concept. As Bea grew older, Lauren acknowledged that, while her daughter may not be “fine” in the black-and-white, ableist sense of the word, she is still unbelievably wonderful. Lauren’s hope now is just for Bea to be her best self and achieve her full potential, whatever that may look like. Along with that, Lauren’s hope is that she, her husband, and the world will forever celebrate and accept who Bea becomes, regardless of her differences. And as much as the “what-ifs” of HIE hinder hope, they enable hope as well. To see the pace at which medicine is improving, and more treatments are becoming readily available, is the pinnacle of promise.

On top of learning to adapt hope to her circumstances, Lauren has learned that small progress is still progress. While parents of a neurotypical child might be excited when they witness first steps, Lauren and her husband are in hysterical tears, because there was a point where no one ever thought Bea would accomplish that. Now, Lauren views every inchstone as a massive achievement in and of itself, not just a step closer to some more “important” milestone. So, while Lauren has cried more than she ever has in her life, she has also celebrated far more than she could have ever imagined. Lauren has also been fortunate enough to learn what love truly looks like in practice. The sheer number of people who have stopped everything to help her and her family when they needed support is incredible. To experience a love so immense for her friends, families, fellow HIE parents, and Bea on a daily basis is magical.

To the HIE parents who may have trouble finding that magic right away, Lauren would tell them what her psychologist told her fairly early on, when she was still deep in her struggles with PTSD, perinatal depression, and anxiety: As parents, we put an extraordinary amount of pressure on ourselves to accept what has happened right away. This leads to a Catch-22 situation of sorts—in order to fully accept something, there has to be certainty about what you’re accepting. Yet, there is no certainty with HIE, especially in that first year. What you can accept and be certain of is the fact that you need to grieve. Regardless of whether your child has a clear MRI and ridiculously good prospects or has severe global damage and is in hospice care, you have the right to grieve what you have lost. Because you have certainly lost something. It’s a very normal thing to feel that grief. In no way, shape, or form does it mean you don’t, or won’t, accept your child for who they are. You will have a love for your child that is undefined by outcome. And, even though you missed out on things that you did expect, you will also find good experiences within all of the crap that you didn’t expect to have.

For instance, Lauren never thought she would be able to make it a day without completely falling apart. To her surprise, though, not only has she been able to keep moving forward, she has also found joy within parenting. Bea is the best company ever, and Lauren is so lucky for the adventures they create together. As wonderful as Bea is, Lauren needs breaks sometimes as well. She is thankful that, through Australia’s National Disability Insurance Scheme (NDIS), the funding package not only includes coverage for Bea’s appointments, but coverage for a support worker. The support worker comes to the house each week and takes complete care of Bea for an entire day so Lauren is free to do things for herself, outside of caregiving. Lauren would encourage other parents to accept the help they need and to utilize the resources available for them. For, in the end, parents are humans, with their own limits and their own health. To meet the needs of their children, they need to have the capacity to take care of themselves as well.

Despite the trauma involved, Lauren chooses to share her story because she’s found that openly and repeatedly saying it aloud has helped her make sense of what happened. The act of telling it makes her past experiences valid and real. Lauren also shares this journey with HIE because, while it does not define them, it is such a big piece of her and her family. Being open with those around her about this unique parenting journey has served as an invitation for others to get to know her more authentically.

As you will soon see from the accompanying narrative piece entitled “Shipwrecked,” Lauren has written about her story as well. Growing up, Lauren always knew she wanted to become a writer. During a short fiction unit, as part of her master’s degree, Lauren was assigned to write a piece that had a larger theme and relevance to a modern audience. Partly because of how cathartic it was to engage in storytelling, and partly because it was all she had room in her head for at that moment, Lauren chose to write about those days in the hospital when she felt suffocated by the internalized and externalized pressure to successfully breastfeed Bea. The story serves as a larger feminist exploration and commentary on the often-unattainable ideals surrounding motherhood and the birthing process. For so long after having the C-section with Bea, Lauren would look at her scar and wonder if she actually had a “real” birth, since she never even felt any contractions. But, through this story, Lauren hopes to convey to all the mums out there who did not have the Hollywood, picture-perfect birth that they are still worthy. That what they endured is not a reflection of their capabilities as a mum. That, like her, they, too, will, one day, be able to repurpose all that trauma and pain into a beautiful story.

Shipwrecked

By Lauren Witchard

They called this room the Fishbowl. The name was apt, for she and her baby floated within it, and through the glass door they looked at her. She knew it was a test. There was no escape, no forward momentum, until she proved herself. They watched her breasts, her hands, her baby’s tiny mouth, and they muttered advice that fell like flotsam upon her, leaving bruises and wounds although the words were kindly meant.

She lay upon the vinyl daybed, perched like a shipwreck in the room’s centre. The walls were pale blue, filled with artificial light, and the faded dirty cream of a distant shore. She tried to ignore the way the crisp hospital sheets, somehow full of past fingerprints and yet stripped bare, bunched under her thigh. While her thumbs rhythmically traced the jagged edges of her bitten fingernails, her eyes remained fixed on the tiny life lying motionless in the perspex bassinet, except for the gentle rise and fall of the exhausted little ribs. On the wall above, the clock reminded her that the time was approaching to try again.

In this place, there was only waiting: for rounds, for voices of authority, for signs of improvement, for the next time it was again her turn to contribute her one permitted act as mother. In this waiting, her mind was her constant companion. It talked to her now, a bastardised quote from her previous life.

My little girl was from her mother’s womb untimely ripp’d…

But ripped too late, not early. Too late to avoid the moment her body ran from its responsibilities, turned on the life growing within her. Too late to stop the narrowing of vessels and their bubbles of oxygen.

Too late to stop the screaming of the little brain as it starved and swelled and started to die.

But soon enough that life continued. A fact echoed by everyone who tried to comfort her.

Her hands found her belly, rested tenderly on the dressings that covered the long scar. The line seemed to pulse beneath her fingers like morse code, a distress signal reaching fruitlessly across an empty sea. It would be a permanent reminder that this journey into a new life had gone hopelessly, tragically awry.

After her baby’s removal, when her stomach vomited meconium from its artificial opening as if expelling her child like a waste product, she had lost her maternal privileges as punishment for her body’s failure. She was marooned in a different room on a different floor, rolling then stumbling along an ever-more familiar path to her little girl. Kind-faced strangers drifted in, out and around like gulls, covering her with a weighted blanket of words, terms, cold plastic and metal, and she sat and watched and waited and hoped in a place where time was a wet fog rather than a fixed entity. It clung damply to the fine hairs of her arms as her eyes flicked from screen to clock to screen to face to clockface, to rest each time on that one tiny, white face that was the most important of all. Her hands crept through the fog to slide a finger inside the miniscule palm, and her voice sought to form some connection with her unresponsive daughter, offering her quiet, self-conscious songs, and stories she had always dreamed of reading her.

She tried to shrug the vivid image away. Even now it seemed surreal, far removed from the images she had assumed would be her start to motherhood. But this beginning would not leave her; whatever happened next would be punctuated by these images and the heavy fog that covered those days, a foghorn calling through whatever reality was hers, linking past and present and future irrevocably.

Within the fog, for five days, there had been no cry, no child in her arms, no lips on her breast. Then slowly, the child became hers, though always tethered to the plastic and metal world by cables and tubes, as if they did not trust her not to turn on her child again.

One by one, as she proved herself, the artificial ropes were removed, until only one remained. A nasal-gastric tube, a long name that shortened to NG Tube like a nickname, one long piece of plastic that interrupted her baby’s face as if those beautiful soft cheeks were an error being sheepishly crossed out. It formed a boundary between the blue-green eyes that sought hers, and the tiny pink lips that should have needed her for sustenance; an impenetrable wall there for the baby’s safety, to ensure the child didn’t starve while the tiny body was too weak to find nourishment herself. 

She and her child had floated, no wind or oars of certainty to propel them anywhere. Then suddenly, one morning, she walked in and the water was choppy with action. On Monday mornings, the hospital swelled with specialists and allied health, and on this day they all took turns to stand over her daughter, and hold, stretch, prod, murmur, and then a torch, and a scale, and the whip of a cord, and the child was untethered and placed in her arms. The little lips latched, a little fish sucking on the glass, a rhythmic lap of waves and a little content moan, and she became fully Mother. Her assessors smiled, sharing in her joy, and agreed that she was ready for the next step: staying the night, to see if her baby was strong enough to sustain herself for 24 hours.

And if she could… She could picture the rooming in process already; that golden experience whispered about by every parent in here, that final step where, like children playacting, parents stayed in a hotel-like suite with their babies and pretended they were home, to prove that they were capable of being released.

The clock ticked again, but this time it was louder, overriding her thoughts. 4am. It was time. She sat up on the daybed, stretched her arms, tried not to worry. She remembered when once the clock was white noise in a busy day; now it was a marker of the day’s fragments, broken shells lined up around her child and placing her solely in this glass room where nothing else existed but a daybed, a bassinet, and a baby.

And a call bell, of course. In case she failed.

She unclipped her bra strap, and stood over her child. The baby’s face sunk into the white mattress. Her eyes were closed, her tiny head sticking out of the swaddling like a pearl. She felt her heart thump harder, her stomach tighten. A baby was meant to cry out for sustenance. But how could she, when she was so asleep?

“Please, bub. Feed this time. You must feed,” she whispered.

The baby did not stir at her voice. Or her touch, as she began to gently unswaddle her. Only her chest continued to move, rising and falling in time to the muffled snuffling of her post-tube snoring.

She glanced up at the glass door, expecting to see faces watching her, knowing when she saw only the glass and grey on the other side that they were not far away. Her eyes refocussed on the strange face reflected in the glass; a face void of its normal make-up, heavy with lack of sleep and unvoiced worries, and no glint of her usual statement earrings. Who was this woman staring back at her? She was someone new, someone not yet formed. She searched for hints of who she had been, but all she could see was the baby in her arms. Beside her reflection stretched a hundred duplicate women, each holding an identical baby, repeating over and over along the glass, bouncing back and forth from some reflective surface behind her. She took a moment to study them. There was pain in each set of eyes, and she wondered if each woman had been erased like her, had grieved the loss of the Hollywood Birth, like her, had watched with despair and envy as other women shared photos of their newborn in their arms, passed between family and friends, dressed beautifully for the homecoming, the baby’s face blissfully unmarred by tubes or tape and the mother’s face sparkling with an exhausted smile like sunlight reflecting off a lazy wave near the shore. Her eyes flicked back to her reflection, and it was all in there: the heaviness that comes with exhaustion and lost dreams, the anger, the shed and unshed tears. She blinked before her eyes became moist again.

She lifted the child assertively, hoping the confident movement would rouse her. But the baby’s head lolled against the crook of her arm. Trying not to panic, she sat on the daybed and slid backwards between the armrests, grabbed a pillow and rested the child on it across her lap. Gently, she positioned the little head and the tiny mouth against her exposed nipple, the whisper of baby breath tickling her skin. The mouth fell open, a hand opened a fraction, and for a moment hope surged within her.

But when she placed her nipple in her daughter’s mouth, it sat unwanted upon the tongue.

“Please, darling. You need to eat. Please.” She tried stroking the baby’s cheek with her index finger, and running her nipple down over her top lip. But the baby slept on.

The glass walls seemed to move towards her, the water within growing into waves as it was pushed together, crashing against her. It called to the water within her, which welled and swelled and began to gush from her, turning her face salty.

And then she was sitting, her limp sleeping child stretched across her, her breast exposed and useless, her shoulders shuddering, unable to bear this enormous weight. There would be no escape from this limbo, where she was half a mother at best, and nothing but. Not if her child could not feed without their help.

She became aware of the nurse in the doorway, a woman with wide blue eyes, a round face and no hips whose expression was a swirl of efficiency and compassion. “Are you okay, love?”

Her sobs had overtaken her. Through them she managed to force a broken explanation. “She won’t feed. She won’t wake up.” She felt guilty saying the words, as if she were blaming her child.

The nurse approached. Her name badge read Sarah. Her hands were small and white. One lay itself on her shoulder. “If she’s too tired, you can let her sleep.”

“Can I?” Her voice was stretched like elastic. “I reckon she needs to sleep. But she barely fed four hours ago either. And if she doesn’t feed, the doctor will think she can’t… that I can’t…”

“Can’t what?”

She gathered herself. “I’m meant to be proving that she can feed without the tube.” She couldn’t look up. She didn’t want to see Sarah’s opinion, or any indication that she had failed.

Sarah’s voice was gentle but firm. “You have to be guided by her. If she needs to sleep, let her sleep. Get some sleep yourself. And if she needs to have the tube put back in, the doctor will tell you tomorrow.”

The horror swelled within her like bathwater forcing itself back up a drain. “No. that can’t happen. We need to go home.”

She could not bear to wait any longer. They were so close that she dared to picture her daughter tucked into the base of the bassinet that had waited patiently for a month now for its occupant.

But for now… she looked down at the tiny, exhausted face, the lips slightly parted, the grey shadow under her closed eyes. She knew, even if the nurse had not told her, what her child needed.

She needed sleep. And her role was to enable her baby’s needs, and swallow her own.

Trying to keep her head above the strong tide, she stood and reswaddled her daughter. She lay down on the daybed and curled under the sheet. The nurse was gone. She was alone with her child again. She switched the light off and lay stiffly in the darkened room, her emotions run dry now to leave her exhausted. Good. If she could sleep, she could escape this place for an hour or two.

When she opened her eyes again, the bustle of the hospital in daylight moved beyond the glass in a steady stream. The clock ticked on, but with a new heaviness and despondency. She could not look up as the door slid open.

“So! How did your night go?” The doctor’s exuberance did not belong here.

She fought hard not to let herself cry again. “Not great,” she said to her lap.

She looked up, and saw the doctor, his expression concerned, and Sarah standing beside him, watching her face. She pleaded with Sarah silently, and she nodded almost unperceptively and spoke for her.

“The poor little thing was very tired. She took a bit of effort to rouse, and a long time to feed.”

The doctor’s brows furrowed. “It’s concerning, but not uncommon when the tube is removed, for them to be tired. And we did talk about the possibility of one step forward, two steps back…”

She fought to keep the water at bay, as it swirled and smashed inside her. “Yes, but I know she can do it.”

“Maybe, but we need to be realistic. And I think you need to gain confidence too.”

She wanted to scream. “I would be confident at home.”

As she spoke the words, she knew it was true. She was her mother. She did know what was best for her. Now was her time to fight, not to please everyone, not to follow instructions.

“Please.”

The doctor looked doubtful. Sarah glanced between them. “Could they room in without the guarantee of going home, see what that extra independence does in terms of their confidence over the next two nights?”

The women caught eyes; she thanked her silently and Sarah smiled.

“Ok,” he agreed hesitantly. “Let’s see how you go rooming in.”

And like that, it felt like her world froze for a moment, glittering. She looked about her, seeing the glass and the plastic for the first time, its transparent and temporary nature obvious all at once. The doctor and the nurse, frozen in the doorway, and only her child was moving, her child with her tiny exhausted chest and possibilities that a second ago were unimaginable, and there was a boat, and an oar, just one, usable only by adult hands, and she was allowed to step into it, and take her child with her. Oh, the oceans they could travel together.

She gathered her child in her arms, holding her tight. She could feel her tiny heart beating against her own, a double beat that echoed who she was and added a new identity. She was strong, loyal, and determined; she had proven that before, as a teacher, a daughter, a friend, and now over the month where life had stopped other than what existed within these hospital walls. She had stood up after the MRI had almost crushed her into catatonia, and again after being told her baby may never breastfeed. She could stand up again now, and would continue to stand, over and over, for this beautiful tiny life whose entry had wrecked the ship of her life on a shore she had never intended to tread, leaving them stranded and beaten by waves for which she had never prepared. But now it was she who could navigate this rickety vessel through a new role. In her heart, though her legs were wobbly beneath her, she stepped into the boat, and looked out over the water.

She now knew that in this step, the last of who she had been was washed away, a lingering memory of an individual whispered in an ocean breeze, twirling in a sinking wave. She could only see the horizon, where a new self was smiling hesitantly.