Our Trisomy 18 Journey: Empty Arms

Baby Gabriel’s footprint after passing away from genetic disorder called Trisomy 18.My dad and one of my sister’s came in and honestly, I think at that point, he was still alive.

Shortly after, I had each of my daughter’s come in to meet him, and essentially, to also say goodbye. I kept them separate so that they could each have a special moment with him, without any distraction.

My oldest was nine and it clearly broke her heart, but I think it also provided her with a lot of answers. She touched him and even smiled for a photo. Gabriel also “brought” her and her sister a special teddy bear, which we had him “hug” so that they would always have something tangible that they could hold. (Honestly, I find myself constantly holding their bears, too. It’s one of the last things I have that my baby boy physically touched.)

My younger daughter, who was five, came in after. I don’t think she grasped the idea that he had died, but that is probably for the best. All she knew is that she got to meet her brother and I think she will be eternally grateful for that as she gets older.

I had no intention of letting my four-year-old nephew come in the room, but the baby was so angelic that when his mom asked, it was completely fine by me. It was a honor to share Gabriel with as many family members as possible. I needed people to know just how “real” he was. That I had a son and that while he may have passed away, he was a very real part of our story.

We had brought him a “micro” sized hat and blanket, but it was too big. A nurse offered us the most gorgeous knit blanket and a tiny hat, that fit him perfectly. Those gifts will be cherished for a lifetime. No matter how much you try to prepare, you just can’t. You cannot even begin to fathom this type of experience, let alone fully prepare for it. Bereavement photo of a mother with her child after induction of labor due to genetic abnormality and Trisomy 18

Awhile later, a young man came in the room and just stood there, almost in shock. I knew immediately he wasn’t a priest because of his clothes, his wedding ring, and his utter inability to speak. If I had to guess, I would assume this was his first time dealing with a situation like this and honestly think he became overwhelmed at what he saw.

At some point, he asked us what the “hardest part” of all of this has been, starting with me, then going to my mom, my daughter, and my husband. We tried to answer, but the truth was, we were right in the middle of it. He eventually pulled out a Bible and said some beautiful verses that I was grateful to hear, but honestly, I was also ready for him to leave. We needed our space.

My daughter said her final goodbyes and the next thing you knew, an older gentleman made his way in. If I wasn’t brokenhearted, I would have given him a huge smile and would have done a better job at expressing my gratitude. This man was a kindhearted volunteer photographer, who had heard about my Gabriel, and headed to the hospital to serve us in our time of need. He clearly knew what he was doing, but nonetheless, I could feel my son’s lifeless body getting cold and every minute that passed, my heart was falling apart. I just wanted to hold him tight.

He took photos of my sweet boy in my arms and in the hands of my husband. He made sure my mom was also included.

But then it got hard. He asked to take my tiny boy to the warming table to take some shots of his hands and feet. It was really hard. I knew that in the end, those photos would be something we’d cherish forever, but watching his body be manipulated by strangers was damn near impossible. At some point, my husband had to leave the room. He told me he was just “ready for Gabriel to rest.” It was a catch 22. We wanted the photos and will cherish them forever, but when time is limited, it feels like you are sharing time that isn’t yours to share.

The photographer left and mom said her final goodbyes to the grandson she would never get to know.

Finally, we were alone. Just the three of us. He was long gone, but that didn’t matter.

I held him. He held him. We held him together.

At one point, the nurse came in. We decided that it was time for him to have a bath. My husband wanted to be the one to clean him. Of all the emotions I’ve ever felt in my lifetime, watching him cry as he bathed our deceased child was one of the most significant moments I have ever experienced. I was hurting, but also admired my husband so much in that moment. He treated Gabriel with every ounce of dignity that he could.

There had been a shift change, but we were happy about that. We had experienced both the day and night shift nurses, and it seemed only fitting to share our experiences with both. They were the people helping us, compassionately, through the most difficult thing we’d ever faced. Erica offered to take Gabriel to have some molds of his hands and feet made.

We had to really think about it. The molds, we were told, would likely be cherished for a lifetime. Yet, Gabriel was cold at that point and I was having a hard time facing the changes that were happening to his body. I didn’t know what to do.

We decided to let her do it, though, because we didn’t want to regret not having them later on. We gave her a baby blue bereavement gown that we had purchased, just in case, and asked her to put it on him. She took about an hour and it was excruciating. In the end, I will always be grateful.

She brought my boy back to me, wrapped up like a little angel.  She laughed a little and said that, even after passing, he had decided to have a bowel movement while she was with him. It sounds silly, but it made me smile. I suppose it made me happy that his body got to function in some way. She took such great care of him while she was gone, but he was cold and limp nonetheless. It was time to say goodbye. It was time to let him sleep.

She left the room and this time, we had him by ourselves for a significant period of time. I rocked him like a mama rocks her baby goodnight. I sang to him, even if just for a minute. Handing him over was the single worst moment of my life. I kissed him and then kissed him again and again. As I felt him getting colder and limper, I built the courage to ask my husband to please take our baby from my arms because there was no possible way I could hand him over on my own. He was struggling just as much as I was, but he bravely took him from me and brought him out into the hall.

It was the last time I ever got to see him.

At that point, it was really late and they didn’t want to discharge me. I knew there was no possible way that I could sleep, so I asked the nurse for medication. She tried to get me sleeping pills but was denied. We settled for a few Benadryl with the hope I’d get even a few minutes of sleep. I didn’t have much success.

Early the next morning, the nurses came in to resume their testing. I was told I could get ready to discharge or I could wait until after traffic. I wanted to leave… and yet I also wanted to stay forever if it meant being near my boy.

As we walked down the hall, empty handed, I asked the nurse to show me where he was. She lead me to the room. I kissed my hand and placed it on door, saying goodbye to my sweet little Gabriel one last time.

Leaving was treacherous. Words cannot possibly begin to express the pain I felt. Everything I saw, every mile we drove was just another reminder of how I was leaving my baby behind, dead at a hospital, while I went home to try and move on. It was excruciating.

It is amazing how much you can miss someone that you ever had the opportunity to know.

Battling Grief After the Loss of A Child

From my life’s experience, I believe that there is depression and that there is grief. While you certainly can have both at the same time, the two are not interchangeable. I am grieving.

For many years, I struggled with depression and on many occasions, found myself no longer having the will to live. At two distinct points in my life, those emotions were so strong that I attempted to end my life, thankfully to no avail.

I had lived through some of life’s greatest struggles. From difficult break-ups to being cheated on while pregnant, from sexual assaults to nasty custody battles, I had experienced heartache, anxiety, and emotional exhaustion that challenged my very existence.

It wasn’t until the birth of my daughters that I realized that life was so much bigger than me and my day-to-day problems. I understood that my existence here on earth was so much larger than the hardships I faced. I fought to heal myself though a combination of counseling services, medications, and the realization that my success rate for making it through difficult days was 100 percent. While depression and anxiety still sneak up on me from time to time, as they do to everyone, I am much better equipped with the tools, resources, and mindset to find the good in my life and to move forward in a positive, productive way.

But more recently, I was introduced to the most raw form of grief–the loss of a child– and its presence has shaken me to the core. I am not depressed. I am heartbroken and emotionally devastated.

Even just the simple act of crying has changed for me. In the past, my mind would fill with negative thoughts and anxiousness and subsequently, I would begin to cry as I felt sorry for myself and whatever was happening in my life. With my grief, even that process is different. Sometimes I will be laying in bed and out of nowhere, my stomach will just start convulsing and not long after, the tears come flowing–as if the hurt was literally the result of a physical heartache or from pain originating at my very core. Other times my mind can be blank, in an attempt to disassociate from reality, and yet the tears start coming a mile a minute and will not stop.

I thought back about all the times I experienced depression and tried to recall how I survived them, but then realized, this is inherently different. Your heart may be broken when you end a relationship. It is natural to feel anxiety and fear about custody issues and your changing family dynamics. When you’ve been traumatized, things become more difficult, but even still, there is a “light at the end of the tunnel” that reminds you that your feelings are only temporary. You will find a new partner. You will adjust to changing family dynamics. You will be able to move on.

When you experience the grief of losing a child, that hope for future relief is nonexistent. You know that no matter what else shifts in your life, you cannot regain what you lost. You understand that this type of loss is not temporary, but rather, your grief will reside within you for a lifetime. Each missed milestone will be a constant reminder of what could have been.

You can overcome depression, or at least control it with right combination of treatment, but you cannot overcome the grief of losing a child. Instead, you just have to learn to live with it–and that notion terrifies me beyond belief. This time around, there is no hope that “time will heal.” Unlike the comforting words of the phrase “this too shall pass,” a parent’s grief will never subside and it is absolutely frightening to think that the pain I feel will never go away.

I keep being reminded that the grief will continue to shift, to metamorphosize over time. I hope with all my heart that the philosophy that grief tends to transition over time is true because for now, no amount of treatment can help me regain what I have lost. I am not depressed, but rather I am mourning–and to me, those are two very different processes. I have zero choices about how to handle this, nor will I ever be able to gain control over what happened. I will never be able to change the circumstances. He is gone.

The day my son was born, my heart tripled in size. The day he died, he took a third of it to heaven with him. Nothing I do here can fix that. For the time being, I just have to live one day at a time and hope that someday, I can find the strength to channel my grief into something positive.

The struggles of dealing with a small child after the death of a sibling

A grieving mother trying to cope with other small children who do not understand the death of their siblingAs we were driving home today, my five-year-old asked, “Who is going to blow out the candles on Gabriel’s birthday?”

I just looked in the rear-view mirror, faked a smile, and said, “you are.”

While her intentions were sweet and I hope to one day be able to face those questions with more grace, having to explain and re-explain has been difficult.

Not too long ago, she asked me about the crib. When I told her that Gabriel lived in heaven now, she asked me why we couldn’t send the crib there. I am sure that one day, I will look back and smile at the thought of her being so caring, but for now, it is hard.

After he passed away, I told her that his soul was going to be with Jesus now, but that his body would be staying at the hospital for a bit–until we could bury him under his special tree at the cemetery. The other day, she asked me if we could go visit him at the hospital. When I told her we’d have to visit with him in our dreams now, she was confused. She said I had told her that we were leaving him at the hospital, so she wanted to back to see him.

Being a mother to two absolutely wonderful little girls has been my saving grace throughout all of this. When I have felt like giving up, they were my reminder that quitting wasn’t an option. And yet. having to continue to be a mother throughout all of this has been an enormous challenge.

Waking up each day and facing reality has been hard enough, but having to care for other people when you can barely care for yourself is rough. Helping other people get dressed and to and from their schools and activities seems so frustrating. How can life just go on around me when mine just came to a halt? Then again, it forces me to remember how much love and goodness there still is in the world.

Later in the day, I thought back on the question she had asked about birthday candles. Maybe it wasn’t so much a lack of understanding on her part, but perhaps it was a more positive approach towards coping. Maybe one day, we will get to the point where we have “birthday” parties for their brother when we will celebrate the gift of love that he brought us rather than the void we’ve felt since his passing. Maybe she really will be the one blowing out his candles, not so much in his absence, but in his honor.

Our Trisomy 18 Journey: Hello and Goodbye

Bereavement photo of a mother with her child after induction of labor due to genetic abnormality and Trisomy 18

The amount of emotion we felt on this day is indescribable. No parent, no person, should ever have to both welcome their child into this world and then have to hold them as they die.

You are so overwhelmed with joy and with heartache that there really is nothing else in life that is comparable. Until you’ve been there, there is no possible way you can understand.

While it is my greatest hope that no one else ever has to experience this same sort of pain, I know now that it happens every day. Whether it be from Trisomy 13 or Trisomy 18, or from any other form of fetal demise, it will happen. Since I cannot do anything to prevent it, I at least want to share my story so that other women can go into these circumstances knowing they are not alone. Besides my faith in God, the only humanly thing that has consoled me has been hearing the stories of other women who have lived through the death of their baby and have somehow, someway, survived it.

One notable thing I have experienced is that it doesn’t seem to matter how much time has gone by, every mother I have spoken with who has lost a child can instantly be overwhelmed with grief when talking about it. Whether their experience happened two, five, 15, or 20 years prior, no amount of time can heal the pain. Instead, you seem to just learn how to deal with it.

Nonetheless, seeing and hearing these women tell their stories while also still facing the world has been my saving grace. I pray that I, too, will someday learn how to cope with the fate that has been chosen for me.

I went to the hospital on a Tuesday, terrified that I would meet my son and it soon would all be over. While most mom’s rejoice at the idea of meeting their child for the first time, those of us facing these circumstances dread it. The idea of leaving the hospital with empty arms was heart-wrenchingly painful. The idea that I could be pregnant one day and not the next was terrifying. I wished I could just stay pregnant forever.

The process of labor and delivery wasn’t a simple one. With a past medical history of c-sections gone awry and a long, scary relationship with infections, childbirth in general was and remains risky for me. Since a baby with Trisomy 18 could come at any time, the notion of scheduling a c-section was out the door. As many of you mom’s know, the need for an unscheduled c-section, especially after an induction, makes the process a lot scarier as your chances for infection increase dramatically. It was our goal to avoid a c-section but we also needed to try to deliver without my uterus bursting or previous incisions opening. That was no easy task.

To try to keep things under control, I was induced, but only with half of the medication that a woman without my history would have had. That led to a long, very slow labor process. My room was strategically placed at the far end of the hospital, away from as many other mothers as possible. They didn’t need to be near a grieving mother and I certainly did not want to be near them. The idea of leaving empty-handed was enough to tear my heart in two; seeing their joy would have been devastating. I didn’t mind being tucked away in a world of my own. Other than occasionally hearing another baby’s heartbeat on a Doppler, the area was free of the sounds of mama’s embracing their children for the first time and welcoming them into the world.

I will say that the doctors and nurses at University of Washington were outstanding. They were kind, loving, and compassionate at every step along the way. Their genuine concern for me and their empathy towards what I was going through was incredible. In fact, they were so sweet and considerate during the process that there were times when I was able to feel calm and collected, even though I was facing the unthinkable.

Hours passed and before I knew it, it was Wednesday. At a certain point, the pain of contractions became too much to handle and I asked for the epidural. I had waited as long as possible because the medication that they given me for induction made me very sick and I wanted to be able to get myself to and from the restroom. The thought of the epidural also made everything seem so “real” and no amount of time had made me ready for what was about to come.

To be honest, the medication had horrid side effects. The heater was cranked up as high as it could be and yet I was literally shivering. My fever had skyrocketed to 105 and I was shaking despite the countless warm blankets they placed on me to try to control it. The doctors ensured that the symptoms I was experiencing were normal, and that unfortunately, they were common side effects of the medication. I was miserable and that night was a trying one, to say the least. By Wednesday, the side effects started to shift and rather than feel cold, I felt hot and started to throw up uncontrollably. All of the changes, plus the lack of sleep, left me exhausted.

At some point, I felt my water break and it was bitter sweet. When you are in that much discomfort, you obviously want the process to progress–but for me–that meant I potentially would be saying goodbye. I wasn’t anywhere near term and knew he likely only had minutes to survive, and that’s if he survived the childbirth process. Nothing notable happened for quite some time, though, and I remember just feeling exhausted. I still wasn’t dilated.

At some point, however, I got a rush of adrenaline and “just knew.”

The doctor came back in to check my cervix and told me it was time. I can’t explain the emotion I felt in that moment. I didn’t want it to be time. I didn’t want to make him come out of the one place on earth that he would ever be able to thrive. I wanted the impossible; I wanted to stay pregnant and to protect him forever. I didn’t have a choice, though and my pleas were left unheard.

I was told that I could either just “wait” for him to come out or that I could push. I remember two things going through my head. One, he could die waiting, if he hadn’t died already. And two, I knew that I wanted to be a part of the process and to help my baby boy the one time that I had the ability to do so.

I pushed. I had to take some small breaks in between my efforts, not because I was tired, but because emotionally, I was overwhelmed. The time had actually come and my heart was breaking. When most women were pushing to bring someone into the first day of the rest of their lives, I was pushing to what likely would be the last day of my baby’s. I was broken, but had a job to do.

I will never forget what it felt like when he came out and the silence that ensued afterwards. The doctors were being very gentle, but weren’t saying much. I asked if he was alive, and they didn’t know. They clamped the cord, grabbed a blanket, and handed my precious little angel to me. We named him Gabriel, after the archangel who came to share the good news with Mary.

Gabriel was tiny, but he was absolutely perfect. The genetic doctors led me to believe he would be hard to take in, but he was nothing short of angelic. He was laying in the fetal position with his tiny legs, tiny feet, and tiny toes all perfectly formed. His arms were so very sweet. His face was precious. He had my husband’s mouth. Other than some almost unnoticeable issues with his little fingers, there wasn’t one thing about him detectable by the average person that was out of the ordinary expect for that he was very, very small. He was almost exactly 12 inches long and almost one pound.

The nurses and doctors were trying to listen to his heartbeat, but because he was on my chest and I was crying, it was hard to hear for sure. After about ten minutes, I allowed them to take him over to the warmer, where they were able to find an isolated heartbeat. It was faint, but he was–alive. My baby was alive.

They gave him back to me and my mom grabbed some holy water and baptized him to the best of her ability.

The next time they checked, his heartbeat had ceased. While I felt like it was about fifteen minutes time, the official record says he lived for 21. It shattered my soul when they told me that they could no longer hear his heartbeat, but I also found comfort in knowing that he had passed away in my arms, with my husband’s hand helping hold him.

We were all he ever knew.

Gabriel knew nothing but our love for the entirety of his lifetime. Never did he have to experience the cruelties of our world, but instead, spent every moment of his life surrounded by the love of his parents.


Our Trisomy 18 Journey: The Impossible Choice

A mother faced with an impossible choice or decision after being an ultrasound revealing fetal abnormalities and the genetic disorder known as Trisomy 18 or Edwards Syndrome. She has been given the option to terminate the pregnancy for her own health or to go full term knowing her baby will die after birth.

Frankly, my choice when facing a Trisomy 18 diagnosis is no one’s business but my own.

But being put in a position where I was asked to make an impossible decision has opened my eyes and my heart to others and I urge you all to do the same.

Throughout this process, I was given four options. The first was to terminate the pregnancy by stopping my baby’s heart and having a D&E (Dilation and Evacuation) at an abortion clinic. I would be put to sleep and everything would be “taken care of” by the time I woke back up. The part that really upset me was when the doctor told me that during this process, babies are removed with forceps and a vacuum. When I asked if they were dismembered, she said that at least in some states, that can actually be a requirement. After seeing, hearing, and feeling my baby for so many months, the thought of taking that route was too much to bear. Even if the D & E was best for my health due to my medical history, it was not something I could personally live with.

To be candid, I am a Catholic by faith but also an advocate of social justice and equality. With that being said, I have never advocated for or against abortion and personally believe that choice should be made by the pregnant woman and her medical team in correlation with her ethical and religious beliefs. It angers me that men even have a say in a woman’s rights to her own reproductive system. But back on topic. This is the one time I wish I didn’t have a “choice” and that God would make the call for me. I couldn’t understand why he gave me a baby whose body wasn’t feasible for life after birth, yet asked me to carry it in my womb. Parts of me wished I would just miscarry and let God’s will be done while he was still safely in my womb. Another part wanted desperately to meet him.

I will say that this process has shaken me to the core, though. I couldn’t stomach the idea of having to go into one of those offices and potentially having to sit in a waiting room with a young woman who was using abortion as a form of birth control. While one woman could be there to end a pregnancy she desperately wanted, another could be there for a quick procedure, just for the sake of convenience. It was an odd feeling that really made me question abortions in general, but particularly late term abortions.

I then thought about women who had already lost their sweet babies in their wombs and who were then forced to endure the agonizing task of waiting until an appointment was made available to help. Even if the baby had already passed, I cannot even the fathom the heartache of needing to have it physically removed. No mother should have to go through that and yet I knew that at any minute, that could become my fate.

Nonetheless, these “abortion” clinics must be full of woman who are there for so many different reasons. From making irresponsible choices to being raped by a family member…to having miscarriages, maternal health complications, or fetal demise. Who are we to assume that everyone there wants to be there? It isn’t a safe assumption to make.

Although the D & E was never an option for me for a variety of reasons, I couldn’t even fathom what it would be like to show up and face hateful messages. Having a miscarriage and needing a child removed from your womb is obviously a highly emotional time in a woman’s life, as is having to make a choice about your health or the health of your unborn child when faced with fetal demise. Judging others for making impossible choices doesn’t seem very Christian at all. I suppose it just reminded me to be more empathetic and to hope others would do the same. We all have a story, and unless you have faced the same circumstances, you truly should not judge how another person handles their hardships.

Back to my choices. The other available options involved the early induction of labor and delivery. One choice would involve stopping the baby’s heart pre-delivery and the other would be to induce labor and wait to see if he was born alive or if he would be “born sleeping.” While the thought of stopping his heart initially seemed so cruel, I do have to admit that my mindset eventually shifted after I learned more about his genetic disorder and what it could entail. I wasn’t sure if stopping his heart and letting him pass away safely in my womb would be that bad after all. At least I would know he never experienced pain and that every moment of his life was spent surrounded by love.

I spoke about these choices often, especially to other mothers who knew how hard of a decision it would be. When contemplating early induction of labor, I was terrified that I would be “messing up” God’s plan. I didn’t want to hurt my baby and was fearful that inducing labor was the equivalent of me essentially killing him. My cousin lovingly reminded me that when we give our children vaccinations, we are trying to help them… not hurt them. She encouraged me to think of early induction as a way to do something “FOR my baby, not TO him.” That mindset really helped me to at least open my mind to the idea, especially considering the montage of medical risks I was facing if I went full term.

No matter my choice, a D&E and/or early induction of labor is only allowed up until the 24th week of pregnancy. Since I was 21 weeks when I found out, that didn’t feel like much time to decide the fate of another person’s life.

The last option was to wait. Since 95 percent of babies with Trisomy 18 do not make it to birth, there was a high chance that our baby would miscarry and we would never get to meet him. On the other hand, by waiting, there was a possibility that he would come into this world alive, and potentially very soon. Alternatively, he could also be born at full-term, with a slim chance of survival. There really was no way of knowing for sure.

I was reminded many times that, whether he came early or at 40 weeks, there was a large possibility that he would be stillborn because the process of childbirth is often too much for these little ones to bear. It hurt to hear that, but I also needed to prepare myself for any and every scenario.

If there is one take away from all of this, it should be that no one or nothing can you prepare you for this type of scenario. People will have their opinions no matter what option you take, but until they have actually walked a mile in your shoes, their opinions are irrelevant. Until a parent has to make this impossible choice, they have no idea what it feels like physically or emotionally, nor can they possibly comprehend the impact of your decisions. A mother in this circumstance needs to take into account what she feels is best for not just for her baby, but for her health, as well.