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.

 

#Trisomy18 #EdwardsSyndrome #induction #labor&delivery #deathofchild #UniversityofWashington #Aparentslove

What are your thoughts?

%d bloggers like this: