Breaking the Silence: The Truth About Losing Our Baby

I have thought about different ways to break the silence revolving around our son's stillbirth many times, but after every attempt it all felt inadequate and I gave up. This is probably why there is still a stigma concerning stillbirths -- the people who have experienced it can't express it, and those who haven't continue life with blissful ignorance. This doesn't sound that bad at first, considering the strong desire for those affected to want to forget the trauma as well as the fact that anyone who hasn't lived it doesn't want to have their metaphorical sense of security 'bubble popped' . . . That is, of course, until it happens to them. In that case, where are such people to turn to for advice or comfort? Who should they ask for what to expect? How are they expected to cope with the crippling pain and anxiety that follows? I'll tell you what happens, these parents are forced to live through it the hardest way possible and pray they make it out to the other side of feeling happiness and hope again one day. I was fortunate enough, and unfortunate for that matter, to have witnessed my sister's loss of her son and the brutal process of grieving after a stillbirth. . . That is to say, what she allowed everyone to see because there are many thoughts and emotions a mother never reveals to another soul which she chooses to carry alone, inside herself. Still, there is no preparing for a stillbirth and no way for a mother or father to wrap their heads around never seeing their child again.

First of all, my reason for sharing such an intimate experience with friends, family, and strangers is not for commiseration or pity. I want to share my story to keep my son's memory alive, to offer an honest platform discussing what it feels like to be in a situation like ours, to give comfort to those going through something similar but unsure if their own feelings are normal, to help myself cope with what happened by talking about it, and to spread awareness about stillbirths and congenital heart defects, the terrible condition that caused my son to die.

At our 20 week ultrasound, when they told us our perfect baby boy Zakariya wasn't so perfect in a very major way, the cardiologist discovered he only had half a heart, a congenital heart defect known as HLHS, Hypoplastic Left Heart Syndrome, which had no known cause and no cure. We were deeply attached to our boy even then, so despite this terrifying finding we made a choice to do everything we could to give him the best life possible. This meant going into serious overdrive! Our life was no longer simply taking daily prenatal vitamin and going to monthly doctor visits, but now we spent all of our time taking every precaution possible. The focus was on learning everything we could about his condition, asking lots of questions to professionals, more frequent visits and ultrasounds, and doing everything imaginable to prevent the dreaded PRETERM LABOR. This is when we started fundraising and sharing Zakariya's story online to gather more support and awareness of his condition. Despite staying positive and doing literally everything with our son's best interests in mind, week after week we continued to get worse news of his heart and prognosis. Regardless, we loved Zakariya more deeply than anything in the world and we never gave up on him or staying positive about his future.

Fast forward some weeks, past developing gestational diabetes, taking insulin, and traveling from New Orleans to Houston for a consult at Texas Children's Hospital, and that takes you to the last day of Zakariya's life. The reason for explaining my pregnancy and it's hardships is to show our level of faith and commitment to making sure our son got better. We aren't sad about this though, because we didn't know he wouldn't make it and felt we had to do what we thought was best at the time given the information we received. Maybe some people don't see my loss that seriously because they have never had children or because he wasn't born yet, but to me and my husband Zakariya was very much alive inside of me.

Like any parent, I remember all the first times: The first time I felt a flutter, his first kicks and hiccups, and the first time he was startled. I was laying in bed and moved my hand to by belly unexpectedly causing him to jump. I felt so bad for waking him up and scaring him, but it was also really cute to see. At 32 weeks we were told that he might not make it to be born because of the seriousness of his heart condition, but Zakariya was a fighter and he would do well in all of his ultrasound assessments (Stress tests, BPPs, etc.). I remember how strong he would kick and punch me, making my back and ribs constantly ache. These things were reassuring to us, so we continued to stay hopeful. Our grieving truly started on the same day that keeps playing over again in my mind: the last day that I had while my son was alive.

Like I said, my son was very active and more so at night. On the night of Sunday, August 13, Zakariya was more active than usual. I told myself that when he would calm down and stop kicking and punching so much that I would fall asleep. Needless to say, he didn't and I ended up playing solitaire all night on my phone waiting but, eventually, I got some rest. I was looking forward to seeing him again for his echocardiogram on Tuesday, but I knew that we were supposed to move out of our apartment by the end of the week and move to Houston since I would be 9 months. On Monday afternoon I had lunch and decided to venture to Target while I was still feeling well enough to buy some moving boxes. I figured it was the least I could do since I couldn't actually move anything. It was around 3 p.m. and a very hot day but I figured I needed the exercise so I went out. I was feeling a bit light-headed so I called my husband before but told him I was well enough to run in and buy what I needed before going home. I put my husband on speaker phone and, like always, his voice got Zakariya excited and kicking. At the time, I didn't know that would be the last time I felt my baby move.

I made it from my car to the inside of the store when I began to feel more light-headed and hot. This isn't unusual for a pregnant lady in the summer time and I had fainted once before, but much earlier in my pregnancy. I knew the feeling and told my husband to come get me right away, but thankfully laying down a while helped. When Mohamad came we both went home to rest and make sure everything was okay. After all the excitement it was almost 5 p.m. before I realized our boy wasn't moving much, so I followed the advice doctors give and drank something sweet then laid on my side to count kicks for an hour. It wasn't even an hour before I left to get checked by the hospital, because it was extremely abnormal for Zakariya not to be irritated by me or Mohamad and kick back. . . although we knew stillbirth was one of the possible outcomes for him nothing prepares a person for it.

Even now, I have to force myself to write what happened next because it still feels unreal. We hoped that he was sleeping and being stubborn. . . we prayed that he was okay the whole ride to the hospital. . . but inside we were afraid to face the truth that he was gone. I checked in at the Prenatal Emergency Department and explained everything that happened. I remember sitting in silent anxiety, holding my husband's hand, and still trying to wake my baby up. I chose not to call anyone because it was just a regular Monday and why would I worry anyone if it's nothing? I'm asked all the same routine questions once admitted, "How many weeks are you? 35 weeks and 3 days.; How are you feeling? Fine.; How is your diabetes? Well controlled." I change into the gown, they get my vitals, and then finally they look for the baby's heartbeat. I held my breath so long waiting to hear his strong, pounding heartbeat that I heard so many times before since I was 14 weeks pregnant but nothing. The nurse tried to lie and give us hope that our baby was fine but maybe in a bad angle, or moving, or it was the equipment. The truth started setting in then that we wouldn't get a chance to hear his heartbeat again. The on-call MFM (maternal fetal medicine) doctor comes in to take a look with an ultrasound, but really to confirm what we all fear -- that our son died. The doctors and nurses crowd the screen so I can't see and the room falls silent as everyone watches and waits for any sign of movement or beating. My husband sees what they see and gives me an ominous look, shaking his head as if to say he is gone. A while goes by, which feels like forever, before I'm forced to ask if they found a heartbeat yet, but the doctor looks at me and shakes her head no. I watched in disbelief as my pregnancy changed from high-priority care to low-priority in a blink of an eye.

We cry and plea for them to tell us something different or do something, but it was over. All the fighting and trying was over, and Zakariya was gone. I remember gripping my husband's hand tighter... then holding my chest. It was as if I could feel my heart as it shattered. Tears streamed uncontrollably from my eyes and all I could do was look up at the ceiling, dead inside with goo still on my belly. Tears have never burned as much as those tears did. The thought alone of losing a baby is gut wrenching for any mother, but having it actually happen is utterly soul crushing (and that's putting it lightly). I can recall that feeling so clearly because it felt like it lasted forever, and in a sense I don't think it ever left. Even now a month later, the same feeling hits me like waves breaking hard on a rocky shore.

Upon seeing us break down, the nurses excuse themselves and step out the room, while the MFM attempts to offer us comfort. I couldn't tell you what she was saying or if anything anyone said would have mattered but my husband, becoming visibly irritated by a strangers presence at such a sensitive time, asked her to leave. They had told us he was gone shortly after 6 p.m. but we were clueless as to what to do next. I limited my calls to only my sister and my mom, because they were the ones I felt could offer me the most comfort at the time. These types of calls are impossible to make though and I waited about a half hour before I did, after all there was no rush. There are no good ways to break such terrible news and I didn't know if I could bring myself to do it, but people are capable of doing a lot when they have no other choice.

We were left in the same room for over an hour before one of the nurses came in to ask what we would like to do. [A lot of thoughts start running through my mind: What do you mean? What are we supposed to do? How are we supposed to handle this?] She tells us we have the option of getting induced that night or coming back later on the next day. The thought of having come back and give up my baby was too appalling to consider so we chose to deliver as soon as possible. I initially asked for a c-section, because I was so afraid of living through this horrifying experience (it was my first pregnancy after all) and I wanted it to be over as fast as possible. However, c-sections are not elective and reserved for emergency or high-risk situations. Since I wasn't preeclamptic and the baby wasn't in distress I needed to deliver naturally, and in retrospect it was probably better physically.

When the initial adrenaline from shock wore off the reality of my situation started settling in. My mind was raging with thoughts: I'm supposed to give birth to my son today. . . But what about my birth plan? No one cares about it, you're different now. . .But I'm not prepared -- I don't have a delivery bag with me -- my body doesn't want to deliver him yet. How will I make myself ready? Oh well, ready or not it's going to happen now. But, we gave up our apartment and are moving this weekend. Where are we going to live? It doesn't matter, there is nothing for you to move for now. A person's mind doesn't have a choice but to face brutal reality in a situation like this because it is a massive task and you either come to accept it as truth quickly or get swept away with your thoughts and feelings. If you don't accept what will happen, and not everyone does, it will still happen but it will run you over and destroy you like a freight train off its tracks.

They move us to a room at the end of the maternity ward and place a tear drop on our door. This is when people started to come in to make the "arrangements" for delivering. I met the doctor and agreed to be induced, signed forms for delivery, and, most importantly, agreed to accept pain medications and an epidural. Looking back, that successful epidural was the only thing that got me through labor and delivery. After getting an IV placed and a visit from some family the process was started around 11 p.m. on Monday night. They decided to start off gently with inducement since my cervix was fully closed and it was my first baby. They gave me half of a small pill (called Cytotec) about every 4 hours, but this was a slow process. My mom, dad, and sister went back home because the doctor said it would be at least another 12 hours before I would deliver. It was much longer than 12 hours. . . try 27 and a half hours of labor. I ended up needing every type of inducement method: the pill, a catheter in my cervix, Pitocen in my IV, and they even sat me up for the last 3 hours with my feet together. The thing is, having a baby that has passed away inside of you is basically exactly what it sounds like. But it also makes the delivery much more difficult since, typically, the baby pushing on the cervix causes contractions and helps labor progress.

I was so afraid, even before I was given my epidural at 2 a.m., I couldn't stop shaking. My mind was calm and coherent, but my body knew it was stressed and experiencing trauma. To make matters worse, the last time I had eaten was lunch on Monday and when you start labor and get an epidural you aren't allowed to eat in case you need an emergency c-section. It was also difficult to get in any comfortable position to rest when your legs are cold, tingling logs of dead weight. Thankfully, the epidural worked fine for me and I didn't feel the true intensity of my contractions. Still, there were a lot of uncomfortable feelings and emotions during those 27 hours. That day was Tuesday, August 15. . . Also the day of Mohamad's birthday, which weighed heavily on our hearts as we tried to prepare ourselves the entire day to deliver Zakariya.

Up until now I haven't discussed some of the uglier truths about "hospital protocol for stillbirths." One side of this is the nurses and coordinators that come in the room to ask what you will do once you have your baby and to get signatures. There isn't much for me to discuss considering that it was my husband who handled everything, as far as funeral homes and burial plans go. I will be eternally grateful for him doing this because it took everything in my power not to fall apart during the labor and delivery. The last thing I needed to do was plan for Zakariya's funeral before he was even born. This is an entirely different challenge and one I couldn't understand, so that is a story for Mohamad to tell. Chaplins and social workers visited us frequently to listen to our thoughts and feelings. Sometimes I was feeling in the mood to share and others I would just ask to be alone. Besides, the people I felt most comfortable sharing my story with was the nurses who were caring for me regularly. One of them even told me I should write about my experience to share with others because they were interesting. . . but that's a blog for a different day.

My labor was also a very unique experience... it's similar to what you see in most other delivery rooms: the IV and machines, ceiling lights, blood pressure cuff, etc. What isn't the same is the oppressive sadness that lingers over the room. Instead of having the joy and excitement that normally buzzes through the air, you know that the baby is already gone and now you are just anxiously waiting and wishing you were anywhere else but there. It's a painful reminder of all the hopes and dreams you had just hours earlier that are gone forever when you look down at a fully pregnant belly. It still disturbs me to think about the stillness of my sweet boy in my belly and, yet, how I could still feel his body jolting and jumping vividly in my mind. When you're pregnant it gives your heart ease thinking about how your baby is safe and sound while they are inside of you and you wish it could stay that way forever, but when your baby dies in the womb your body suddenly feels like a death trap. Instead of bringing life into the world it was only a dark place of death, and it's not true . . . but it feels true at the time.

The actual delivery lasted about 40 minutes but for me I felt I was fully ready. I was nervous and scared right before but I know Allah granted me comfort during it. Every time I pushed I made du'aa (prayers) and concentrated on the goal. I pushed the thoughts that scared me as far from my mind as possible and before I knew it Zakariya was born. All I had wanted was to hear him cry or feel him move or open his eyes... but it never happened. I asked to have him placed on my stomach but I didn't know what to expect. He wasn't moving but he was warm and that made it easier to handle. I was surprised by how heavy he was and long. I couldn't believe my body had not only made him but held him. With the rush of hormones after delivery all I could feel was happiness.. I was happy to finally meet my son and happy by how beautiful he looked (even more beautiful than I imagined). He was 6 lbs. 7 ounces and 18 inches long.

My heart was very heavy though, obviously, because I knew the first time I met him he never met me.. I knew the baby in my arms was now as empty a vessel as my womb... I knew the baby I loved, admired, touched, and held was only a likeness of the baby I once had moving inside of me, giving us a small glimpse of the beautiful man he could have been. Unfortunately, we will never know what it would be like to raise him for the rest of our time here on Earth. I knew these things inside my heart, but I forced myself to push those feelings down because I knew I needed to soak in as many details about him as possible.

We took photos and dressed him in a little blue outfit with a monkey on it. I enjoyed every second of holding him and admiring him as much as I could handle before saying goodbye. He weighed the perfect amount and his body felt like an extension of mine. I knew he was gone but I helped make each finger, each toe, each joint, and each hair. I saw his face and body like a beautiful masterpiece combining me and my husband's best features. I know the truth is that all of the opportunities we were deprived of in this life (i.e. seeing Zakariya grow, hearing him cry, looking into his eyes, etc.) are simply paused, saved for us to experience in Jannah (Heaven), when we will finally get see him again and meet properly. I believe our little baby boy is a bird in Heaven, flying peacefully, and waiting to see all his family.

However, the reality that you must say goodbye for the rest of your life to such a wonderful creation hits a mother hard. I said my goodbyes and willingly let the nurse roll him out the room. He had been gone for some time and he needed to go but it was an impossible feat to give him up after lovingly carrying and protecting him for the last 8 months. We went in as worried parents on a Monday and, before we knew it, it was Wednesday and we were being wheeled to a different room without our child.

Zakariya was our first baby and our first experience being pregnant. From early on we had to face difficult news and I found myself constantly reminding my doctors that it was my first pregnancy. Some doctors, like my primary OBGYN and pediatric cardiologist, understood the weight of his condition and were careful with how they treated me but many were not. I'll never forget the first routine doctor appointment I had after we discovered Zaki had HLHS. The OBGYN I was seeing at the time didn't handle high-risk patients and basically dropped me as a patient. Right before I left she told me, "Good luck and happy Mother's Day." I knew that was a few days away but she didn't even care how insensitive those words were to someone who was just told their child has an incurable condition before they are born. This is just the first time of many to come when others have hurt me with their insensitivity.

I constantly think of ways that I can somehow protect future moms from the pain I have felt or prevent it in some way. Sadly, it's not something that's easy to change. The only way to change how this experience is handled is by sharing my own story and make others more aware. I have been through many difficult situations in my life already from divorce to losing my grandparents but nothing has come close to this. At 20 weeks pregnant, I mourned the loss of a normal pregnancy while others were carrying on blissfully naive with their pregnancies. I was too afraid to even admit my son had a defect because I was afraid people would deem me a "bad mother." Before researching congenital defects I was also guilty of believing it was either solely a bad genetics issue or something the mother did wrong while pregnant, or before. I am proof that this mentality is wrong and I'm happy that I shared his journey with others. I know without a doubt that he was a blessing to me and my husband and it warms my heart knowing so many other people loved our special baby.

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Losing a child "Do you want to know what it is like to lose a child? Sit down, let's talk, this could take quite a while. At first you are in shock, and then you are in denial. And pretty soon reality puts your emotions on trial. You lose so much, but the first you lose is your smile. To others you seem okay, but you really are not. The grief that you feel is only the start Because your child now lives only in your heart You treasure each picture that is all you have got You cling to memories that you thought you forgot You know your life will never again be the same. You pretend things are okay, and you hide your pain. You just want someone to mention his name. So you can imagine that he is beside you again. Sometimes you feel like you are going insane You still feel all alone, even when in a crowd. Others can speak of their children of whom they are proud, But to talk about your child, somehow isn't allowed So your child's memories are hidden under grief's cloud You just want to mention his name out loud. With each day you are reminded of all you have lost. And how much your loss has ultimately cost Your child's hopes and dreams have been tossed So before you judge, keep your fingers crossed That you never know the pain of a child's loss. You hold back tears, because they would be a stream You cry every day, but you really want to scream. "My child mattered, how can people be so mean?" You pray for a visit, or vision in the form of a dream So before you tell me some over used silly cliche' Like "He is in a better place" or "things are better this way" Think about what you are about to say I really mean it when I tell you, that I hope and pray That you never know how I feel each and every day."

Written by: Aline Lomastro, a grieving mom

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** Trigger Warning **

Do not keep going if you are sensitive to stillborn images.

- Photo of stillborn -