The Absence

For the past few weeks I’ve been trying to start a series of posts that delves into my experiences as a loss mama with a living child. In one respect, finding the time to write has been challenging when I can barely cobble together the time to eat and shower each day. But with so many thoughts, emotions, and questions running through my mind at any given time, it has been equally challenging to know exactly where to begin.

Then, in the midst of another beautifully chaotic morning filled with crying, cooing, and cluster feedings, I took this photo:

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I had placed Callum down on the bed for a moment while taking a sip of my morning coffee (which also serves as my “breakfast” these days more often than I would care to admit). My husband came into the bedroom and started playfully prodding at our boy with his usual cheery candor. My heart swelled as I saw them smiling at each other, and I quickly reached for my phone to capture the tender moment unfolding before me.

Hours later, I found myself laughing joyfully at the photo, overcome with love for my little family. And then, seemingly out of nowhere, my entire train of thought changed. I was suddenly inundated with the image of a dark-haired toddler girl, giggling away with her daddy and brother in the upper-left corner of the photo. In the blink of an eye, my laughter turned to tears.

I had long expected that Leah’s absence would be felt during notable family occasions such as birthdays, Halloween nights, and Christmas mornings. But more often than not, I am finding that it also confronts me unexpectedly in the otherwise unremarkable bustle of day-to-day life.

Indeed, it seems that I am continuously haunted by the other life that I would be leading if Leah was here, whether she had been one of the lucky babies to survive and thrive after her fetomaternal hemorrhage, or if I had somehow gone into labour closer to my due date, before any complications began at all.

These reflections often take me down two distinct trajectories. Since it is unlikely (although not impossible) that Leah and Callum would have come to exist at the same time in the same universe, I most often envision myself as the mother of a fifteen-month-old girl in a completed family of three. Not knowing the trauma of child loss, each day I share photos and videos of Leah on social media with carefree abandon, unaware that such images may be painfully triggering for others who are less fortunate than I. I am also still blissfully ignorant enough to believe that God’s personal protection guaranteed Leah’s safe arrival into the world, despite the fact that thousands of other children are lost needlessly to miscarriage, stillbirth, and infant death each year. All in all, there is an innocence and insularity to this other life, wherein I happily pass from one day to the next with my growing daughter in tow.

In the other imagined trajectory, the one that makes my heart ache with indescribable longing, most of these factors remain—except that, somehow, Callum and Leah are both here with me. Of course, this cosmic arrangement would have required an unplanned pregnancy at five months postpartum, which would have undoubtedly brought with it a host of mental, physical, and financial stresses. But since it is not completely beyond the realm of possibility, I occasionally allow myself to indulge in this glorious alternate universe, wherein I am able to hold, kiss, and care for both of the children who shared my body for nine months.

I often feel compelled to talk myself down from these imaginings, which is what I did today. In these moments I rationalize that there is no way Callum would be here if Leah was alive, so what good is it to pine for what could never be? But at the same time, I know that nothing can change the fact that I am now a mother of two and part of a family of four. Unlikely as it is that my son and daughter would have ever appeared in a photo together, Leah’s absence must always be felt in a family that will always be incomplete.

Guest Post: Zach’s Story

I am honoured to share the following guest post by fellow loss mama Anne-Marie.

All had gone well during my pregnancy with Zach, my much wanted second baby boy. At least that was the case until January 21, 2015, two days before his due date. Suddenly I found myself in the hospital after sensing that his movements had decreased, and I ended up delivering him by emergency caesarean section soon after. That day I discovered that he had suffered a very rare foetal-maternal haemorrhage, where the membrane in his umbilical cord ceased to separate his blood supply from my own. Why this happened remains unknown; our obstetrician had never seen it occur in his 25 years of practice.

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Over the next week our family spent as much time with Zach as we could. We were able to care for him by changing nappies, taking his temperature, and wiping his mouth. Every milestone was celebrated, like when he opened his eyes and appeared responsive to our voices, or when he stretched his limbs and gripped our fingers. During this time we also received amazing support from our families who brought food, did the washing, and helped care for Zach’s big brother each day.

The medical team stabilised Zach so he was able to have an MRI scan on January 29. At this point he was mainly breathing on his own but was still hooked up to the ventilator. The next day we met with the Paediatric Consultant who delivered the most devastating news we could have received: The extensive damage to nearly all parts of Zach’s brain, including his brain stem, made it very unlikely that he would survive.

That evening Zach was removed from his ventilator and made comfortable. For the next four nights he slept with us in the NICU family room. During this time he was like any other newborn requiring feedings, nappy changes, and lots of sleep. He was fed expressed breast milk through a tube and often woke up crying from hunger.

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On the evening of February 2 we had a family picnic outside while Zach slept in his pushchair, and later on we gave him his first bath. As the night progressed he started to feel very cold and his breathing became increasingly laboured as he slept between my husband and me. The next morning Zach died peacefully in our arms.

Leaving the hospital without our baby boy was the most surreal and devastating feeling imaginable. Our hearts ached and our dreams for his future were suddenly lost forever. So many questions were left unanswered: Why did this happen? Why us? What did we do to deserve this when we wanted him so much?

I never wrote about my grief journey following Zach’s death. Sometimes I wish I had. I would often “write” what was on my mind in my head, and at times I’d share these thoughts with friends (new and old) who have been there for me. I have learned many things over the past year, including how difficult it is to be a friend to a bereaved person. People fear they will upset the person in mourning if they say “the wrong thing” or mention the deceased’s name. I have experienced both sides of this. I wish I had always known what I know now, and I would have been a better friend in the past. I now know that saying nothing is far more hurtful than saying the wrong thing (except “everything happens for a reason”—never say that to a bereaved person).

Talking about Zach cannot make me sadder than I already am. It actually makes my heart smile even though you may see tears. And what seems like ancient history to a non-bereaved person remains all too real for the bereaved. We lost Zach over a year ago and my grief is still part of my daily life. It is not always as raw as it was, but it does not take much to trigger it. Some days a bereaved person may seek comfort with loved ones and other days they may seek solitude. I know I have stopped being social at times and I have not always had the energy to respond honestly to the question “How are you?” It’s a different life from my previous one, but this is what I have had to do to survive.

I want to wholeheartedly thank my friends who have not given up on me, who have checked in regularly just to let me know they are still thinking of me and Zach. For those who have not lost a child, it is hard to understand what a bereaved parent is going through. It’s easy to separate yourself from them and think, “Thank God that isn’t me.” But the truth is that we can all imagine what it would be like to be without a loved one, and if we allow ourselves to carry a piece of the bereaved parent’s grief, we can also imagine the unspeakable pain of losing a much loved child.

To honour Zach’s life, we have made some stickers to be inserted into books and given to children in need for Christmas. My Aunt recently told me that the two books she donated to her local Parish were given to a young mother whose son was also born in January 2015. While I’m happy these books were donated in Zach’s memory to a baby who needs them, I so wish our own little boy was here with his older brother reading to him.

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The sticker we inserted into the books that were donated in Zach’s memory

Zach will always be part of our family. We talk about him with his older brother all the time and we have filled our home with photographs of him. We have Zach’s ashes at home and have had a memorial bench seat installed in the Timaru Botanical Gardens. This is our special place where we go to remember him. He will be forever in our hearts.

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Guilt

As mentioned in previous posts, my grief journey since Leah’s death has been tumultuous at best and torturous at worst. Shock. Denial. Sadness. Anger. Rinse, repeat. Indeed, throughout the past nine weeks I have been confronted by the darkest elements of my own psyche that stand poised to swallow “old Vanessa” up entirely, never to return again. Yet the very worst moments, those where the pain becomes so unbearable that I can see madness beckoning me into its abyss with outstretched arms, have been triggered by the emotion that all loss mamas seemingly know too well.

The guilt.

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Image source via Quotes Gram

And why wouldn’t we feel it? Our unborn children rely on our bodies to nourish them and keep them safe. Medical wisdom indicates that our bodies are designed to conceive, carry, and give birth to babies. So what does it mean when something goes wrong during this seemingly natural process?

Often times it leaves us feeling like our bodies are defective. Like we are defective. Suddenly we feel betrayed by our bodies for failing to perform the procreative function that so many other women seem to do with relative ease. Yet there’s more to it than that.

Often times this dreadful bodily alienation is compounded by our guilt for not being able to prevent our child’s death. In the face of tragedy it is human nature to want to direct blame at someone or something, and too often we turn this blame inward, resulting in a relentless barrage of “If only’s”:

If only I had gone to the doctor sooner.

If only I had taken better care of myself.

If only I had been more attuned to my baby’s movements.

If only I hadn’t exerted myself.

If only I had been more careful.

Enter Loss Mama Guilt, Phase 1:

On the second morning of my hospital stay, the Maternal-Fetal Medicine specialist overseeing my care made a special trip to my room. She sat with me and assured me that there was literally nothing that I did to cause Leah’s Fetomaternal Hemorrhage, just as there was nothing else that I could have done to save her. It was the membrane in her umbilical cord that had ruptured, and she had already been bleeding out into my body for days by the time her movements decreased. I try to cling to this assuring encounter when I find myself sinking into a pit of self-blame, at which point my loss mama guilt inevitably reminds me:

You could have gone to the hospital sooner. You sensed that something wasn’t right. You should have gone right away instead of waiting around to do a kick count. If you had just gone in immediately, Leah might be alive. She may not have had a perfect life, but she may have survived and you would have loved her regardless of her condition. While we’re at it, why didn’t you just go to the hospital and demand to be induced on your due date? Because you were afraid that the induction would be painful and you were so concerned about having a “natural” childbirth? Look where that got you. If you had given birth when you were supposed to, Leah would be alive.  

Now, logically we loss mamas know that we did all we could to protect our children. We know that if there was any way of foreseeing and preventing our babies’ deaths, we would have done everything and more to keep their little hearts beating. We know that we didn’t choose their deaths.

Except in cases where we did. Like mine.

Enter Loss Mama Guilt, Phase 2:

Choosing to remove Leah’s life supports mere hours after her birth was undoubtedly the most difficult and heart-wrenching decision I have ever made, and I can only hope and pray that I will never have to face such a devastating choice again. Granted I have been repeatedly assured by my caregivers that it was never really my choice to make. An entire team of specialists had been working on Leah and they would not have presented the option of stopping treatment if there was any glimmer of hope for her recovery. I often remind myself of this, to which my loss mama guilt responds without fail:

What if the doctors were wrong? Doctors get it wrong every day. You’re her mother; it’s your job to protect her. You should have asked more questions. You could have been more assertive. How could you let them give up on her so soon? How could you give up on her so soon? You were all she had in this world. She fought for 33 hours to stay alive for you; why didn’t you fight harder for her?

I wish I could say that my logic has prevailed against these internal accusations. The truth is that I, and presumably every other parent who has been faced with this life-shattering decision, will probably always be haunted by the “what if’s” and “if only’s” that can never be completely resolved.

What I do know is that I would have been willing to leave this life if it meant that Leah would have been able to stay. I also know that I would have cherished her for the rest of my life in any condition if she had survived. I cling hard and fast to these truths in my darkest hours and I hope that, someday soon, they might be enough to keep the guilt at bay.

 

 

Fetomaternal Hemorrhage Can Go to Hell Part 2: Innocence Lost

Many loss mamas talk about losing their pregnancy innocence after experiencing miscarriage, stillbirth, or infant death. Suddenly they become acutely aware that two pink lines on a home pregnancy test does not guarantee the safe arrival of a healthy baby nine months later. While pregnant with Leah, my anxiety prevented me from enjoying this optimistic outlook (which the jaded among us might call naivete, given that 1 in 4 women will experience pregnancy or infant loss in their lifetime). I always consoled myself that, once Leah arrived safe and healthy in my arms, I would be able to enjoy subsequent pregnancies because I would have a solid life precedent to confirm that my body is capable of carrying a healthy, full term baby.

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Image credit: Charles M. Schulz

But Fetomaternal Hemorrhage changed all that. Not only did FMH (also called Fetal-Maternal Haemorrhage and Fetomaternal Transfusion) snatch my baby girl’s life away, but it also stole my ability to ever feel “safe” in subsequent pregnancies.

FMH has all the trappings of an anxious-control-freak-expectant-mother’s worst nightmare. Here’s why:

  1. A massive FMH is incredibly rare. Like, 1 in 5000 pregnancies rare. Many doctors have never heard of it. The specialist who oversaw Leah’s palliative care had only ever seen one other case of it in his 30 year medical career. Which means that…
  2. …there is very little research on potential risk factors, how to detect it, and what can be done to prevent it.
  3. In most cases, it has no known cause. Trauma to the abdomen can be a factor, as can placental abruption and particular blood clotting diseases. But for the most part, it happens in perfectly healthy and complication-free pregnancies.
  4. The blood loss can be chronic, as was the case for Leah. Since her massive FMH had likely been happening over the course of several days, by the time her movements decreased, the damage had already been done. However
  5. …it can also be acute, meaning that a large volume of blood is lost quickly and suddenly. Once again, by the time the baby’s movements decrease, the damage is often already done.
  6. For the most part, the baby’s decreased movements are the only sign that anything is wrong. FMH cannot be detected through ultrasounds or routine pregnancy health tests.
  7. FMH most frequently happens to full-term babies. This means that it is more likely to strike pregnant women who are well into the theoretical “safe zone.” Yet
  8.  …it can also happen in the second trimester, meaning it is the equivalent of a biological terrorist that can strike without warning at any time, but most likely when it is least expected.
  9. And perhaps worst of all, not all cases of FMH are fatal. If the stars align and the baby happens to be delivered and treated in the nick of time, the lucky ones may grow and thrive with minor health complications or cognitive delays. Since the majority of cases have a more tragic ending, women who lose their babies or see their children survive with major complications are condemned to a life of self-blame and guilt for not being able to save them.

Many loss mamas feel rightfully relieved in subsequent pregnancies when they surpass particular milestones. Women who experience early miscarriages may feel safe when they reach the second trimester. Women who received heartbreaking news at their second trimester anatomy scans may feel at ease when their next baby gets a clean bill of health.

But where does that leave women whose first pregnancies result in a full term loss, whether it be to FMH or other random and unpreventable complications?

I have been told that my chance of experiencing another FMH in subsequent pregnancies is slightly higher now that I have experienced it once, but overall it is very unlikely to occur again. It would be the equivalent of being in a freak highway accident two times over, or winning the world’s worst lottery twice. Unfortunately now that I have been “the statistic” once, I doubt my anxiety will ever let me believe that I can escape a similar tragedy in the future.

In short, Fetomaternal Hemorrhage can go to hell.

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Fetomaternal Hemorrhage Can Go to Hell Part 1: Anticipating the Worst

One of the worst things that can happen to someone with Generalized Anxiety Disorder is to see the worst case scenarios they concoct in their minds suddenly become their reality. It’s much easier to talk myself out of an anxiety spiral when I know there is no logical reason or life precedent to justify my catastrophizing. Throw a cocktail of volatile pregnancy hormones into the mix, and suddenly my default anxiety mode borders on explosive.

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Image credit via Captain Awkward

Physically speaking, my pregnancy with Leah was on the “easy” end of the spectrum. My first trimester nausea mainly consisted of food aversions, I felt fairly energetic all the way through, and my recurrent acid reflux could be easily remedied by chalky antacid tablets. But the anxiety. I felt one whopping day of pregnancy bliss before the worry kicked in. I knew immediately that I loved the little life that was growing inside me, so of course I immediately began worrying about losing it.

To say that researching everything that can go wrong during pregnancy became my hobby for the next nine months would be an understatement. It was more like a full time job. Ectopic pregnancies. Missed miscarriages. Cervical incompetence. Placental abruptions. Amniotic fluid leaks. Umbilical cord accidents. I knew it all, and I also knew that if these things happened to pregnant women every day somewhere in the world, they could also happen to me.

I did my best to proceed throughout the pregnancy with cautious optimism. After all, as a friend had sardonically remarked, I was the “perfect human incubator”: At 29 I was a young(ish) mother in my ideal weight range with no underlying health issues or harmful addictions. I bought books on using mindfulness techniques to mitigate anxiety and tried my best to take my pregnancy one day at a time. Still, each time I felt the cold touch of a Doppler or ultrasound machine on my swollen belly, I held my breath and silently braced myself for the worst.

I did not allow myself to relax in my pregnancy until I was 36 weeks along. And when I heard my anxiety beckon me back to its side, I would assure myself that, finally, I was statistically more likely to bring a healthy baby home at this point than not.

So I finally let go of the fear. I finally allowed myself to embrace the pregnancy bliss that I had heard other women talk about but never dared allow myself to feel. I began speaking about Leah in terms of “when’s” and not “if’s.” I cooked big batches of meals to freeze and made a Netflix playlist to keep me occupied during late night feedings. I washed baby clothes, installed the car seat, and packed my hospital bag. I was ecstatic. I was ready. 

And then it all went to hell.

 

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Leah’s Story Part 2: Saying Goodbye

Roughly three hours after delivering Leah by emergency cesarean section, the doctors gave her medication to suppress her seizures and brought her to my hospital room for palliative care. My husband and I waited with bated breath, since nobody knew how long she would live once her life supports were removed. Since the drugs from my surgery were now wearing off, I was finally able to really see her when they placed her in my arms. She was bigger than we had anticipated, weighing 7 pounds, 2 ounces and measuring 20 inches long, and she was more beautiful than I could have imagined. She had my lips and, as my family and I had long speculated, she had the same full head of dark chestnut hair that I had been born with 29 years ago.

I can’t describe how wonderful it felt to hold her skin-to-skin for the first time. “There you are, my darling girl,” I whispered into her hair. “I’ve been waiting for you for so long.” I traced each fold of her deliciously chubby body with my fingers and stroked her head for hours. If given the choice, I would have continued to do so for an eternity. Exhausted and sedated from the drugs she had been given, my baby girl nestled into my chest and slept. I would like to think that she instinctively knew she was finally in her mother’s arms, safe and warm where she belonged.

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While I relished my time with Leah, my husband assumed the difficult duty of calling our family and friends to share our tragic news. My parents and sisters were already en route to the hospital from my hometown three hours away. Soon our room would be filled to the brim with love from our family, but it is those first quiet hours that I shared alone with my daughter that remain most vivid in my mind’s eye.

As the hours hurried on and evening approached, Leah finally opened her eyes. They were a beautiful deep green, just like her dad’s. At the same time, the seriousness of her condition was becoming more tangible as her initial dosage of medication wore off. It was evident that her body was being continuously ravaged by seizures, resulting in sudden, robotic movements that made my heart break. After my family left for the evening, my midwife helped me express colostrum to feed her, which proved difficult since she had not developed a sucking reflex. Even so, it was important that I give her the nourishing liquid that my body had produced for her, and I desperately wanted to care for her in every way that I could during our short time together.

Refusing to miss a moment with her, I stayed up and held Leah all night. Despite the pain from my c-section, I managed to gingerly walk around my room and bounce her gently when she cried. Early in the morning, my husband curled up next to me in bed where we stayed side-by-side, holding her together.

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Leah in my husband’s arms in the early hours of June 22, 2016

It soon became apparent that our time together was growing short. Leah’s breathing became increasingly laboured and her seizures were becoming more frequent and pronounced. She held on for the morning and my family was able to spend more time with her. The nurses kept coming in to check on us and they attempted to give her more medicine to suppress the seizures. Her lack of sucking reflex made this difficult, however, and the sound of her choking coughs brought tears to my eyes.

Shortly before 1pm, Leah’s lips suddenly turned blue and the colour drained from her face. Her eyes rolled back before snapping shut, and her body began convulsing in my arms. My husband asked everyone to leave before sitting next to me in bed once again; we knew that it was time. I sobbed and silently begged her not to open her eyes. I simply could not stand to look into them during those final moments. A nurse placed her stethoscope on Leah’s chest and confirmed what we already knew.

She’s gone.”

And just as suddenly as she had crashed into my world nine months ago, Leah left us after exhaling one final breath in my arms.

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One of the last photos taken of Leah on June 22, 2016

Leah’s Story Part 1: Saying Hello

Even though Leah had rattled my world with her sudden and unexpected presence, she did take it easy on me during the nine months that I carried her. My first trimester nausea only triggered one bout of full-blown morning sickness, and my other physical symptoms throughout the second and third trimesters were bothersome but manageable. Each ultrasound throughout my pregnancy showed that she was growing healthy and strong, and by the time her June 17 due date came and went, my midwife and I were confidently awaiting the arrival of my healthy baby girl.

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Leah’s 20 week anatomy scan

I was 40 weeks, 3 days along when it all changed. Like many expectant mothers before me, I had been trying to induce my labour naturally for the previous week by drinking copious amounts of raspberry leaf tea, eating entire pineapples in a single sitting, and going for purposeful walks each morning. However, despite my best efforts, the signs of labour continued to elude me. Luckily Leah had begun kicking fiercely and regularly by 19 weeks gestation, so keeping track of her movements in the meantime was easy and reassuring.

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Me barefoot and pregnant with Leah at 36 weeks

Until it wasn’t. My belly rocked with her movements after breakfast on June 20 as per usual, and after dinner I waited for it to happen again. It didn’t. I tried to console myself with the conventional wisdom offered by medical professionals and my mama peers: “It’s getting cramped in there! You won’t feel her kick as much this late in the game.” Ultimately this didn’t work; I poked and prodded, and even blasted music through headphones to try and get her to move. Soon enough I was drinking a glass of cold orange juice and lying on my side to do my first and last self-induced kick count. Still nothing.

I did my best to suppress the encroaching panic. Since we live close to the hospital, I even told my husband to drop me off at the emergency room and head home afterwards so we wouldn’t have to pay for parking. Just a quick confirmation that her heartbeat was fine and I would be back home; back to waiting for labour to begin; back to normalcy. But that didn’t happen. Since I was so far along they sent me straight to Labour and Delivery and hooked me up for an ultrasound and nonstress test. She was alive, but she wouldn’t be for long. Before I knew it, I was calling my husband to bring my hospital bag while being prepped for an emergency cesarean section.

The hours that followed were a blur. I remember my husband holding my hand and speaking words of comfort to me through a hospital mask while a team of doctors removed my daughter from my body. She was born at 4:03am on June 21, 2016. They took her away immediately, and in my drug-induced state I was only vaguely confused as to why I couldn’t see her or hear her cry. I would later learn that she had technically been born “dead” and it took them 14 minutes to revive her. I don’t know how much time passed before they wheeled me into a different room and a doctor began speaking about fetomaternal hemorrhage, tonic seizures, severe anemia, asphyxia, and brain damage. While I didn’t understand half of these terms, I knew in my core what they meant: Despite all my precautions, praying, and planning, the worst had happened.

At this point we were told that Leah would be sent to a children’s hospital in a nearby city for three days of “cooling.” Her extensive brain damage could not be reversed, but they were going to see if they could halt it from progressing. As soon as a bed was open for me, they would send me to the same hospital. I asked if I could see her before she was sent away, and they wheeled me to the NICU. The experience was surreal, to say the least. I could not quite wrap my head around the fact that the tiny girl who had been practicing her kick boxing near my ribs a mere day ago, warm and safe in my body, was now hooked up to endless tubes and machines and struggling for life in this cold hospital.

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The first photo we took of Leah on June 21, 2016

Another hour or so passed before the doctors returned. Despite their best efforts, Leah was not getting any better, and they were not confident that she would survive three days on the cooling pad. Suddenly, mere hours after our daughter came into the world, my husband and I were faced with the unthinkable decision that is every parent’s worst nightmare: We could send her away for further treatment and risk losing her in the process, or we could take her off life support and keep her with us for palliative care. The possibility that my baby girl might die without ever knowing the touch of my skin or the sound of my voice outside the womb was too much to bear, so we made the most loving and heart-wrenching decision we possibly could.

Through a steady stream of shocked tears, we asked them to bring her to us.

Read the second part of Leah’s Story here.

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