Maternity

My Story of Our Loss

Trigger warning: discussion about infant loss and medical trauma

On February 7th of this year, we lost our fourth son, Coby. We had not announced that we were expecting again, which I believe was by God’s design. Today is World Pregnancy and Infant Loss Remembrance Day, and I felt it was a good day to share our story in hopes that it may help other parents of loss feel less alone.

Most mothers who have lost do not tend to share this, because it’s an incredible painful, sensitive and intimate experience. Others don’t share because society still views this type of grief as taboo. Some feel shame about what happened and carry the guilt over it. All of these are very valid and complex emotions. Many know I absolutely adore Chrissy Teigen, and was completely heartbroken about her recent loss of her son. While I don’t know her personally, the parts that she did share were very similar to my own experience. I truly commend her for being so transparent about her loss, as it has opened doors for so many women who have lost to feel there is a space for them to share, openly grieve, or just feel seen and not as alone. Chrissy inspired me to share my story today.

Finding Out about our Pregnancy

We found out we were pregnant almost exactly a year ago, a short while after mine and Carter’s birthday. It was a complete shock to us, (but really shouldn’t have been)…Anyway, shock turned quickly into excitement for growing our family to one more tiny human. Everything was going great during the pregnancy. I had a small subchorionic hematoma, which I also had when I was pregnant with Camden, around 9weeks. This dissipated by 12ish weeks and baby was still growing and healthy. We took a family vacation in Jamaica in January and everything was still gravy.

The Beginning of the End

The second week of February I flew down alone to Florida to see my parents. When I got off the plane and went to the bathroom, I started bleeding very heavily. My doctor told me to get to the nearest ER, which was Tampa General. They brought me right up to Labor and Delivery floor for evaluation. I was still somehow very composed and collected, even when they asked me to sign a waiver about the possibility of the baby being delivered. I was 20 weeks and a few days. I knew that babies born before 24 do not typically receive intervention, meaning the baby wouldn’t likely be saved if delivered.  My husband was back in DC with our kids. It was terrifying to think of going through this alone.

The doctors were unable to determine why the bleeding was happening, as the baby was still healthy and my placenta was in relatively good positioning. They noticed marginal placenta, meaning it was close to the cervix but not covering it. They had no reason to keep me inpatient, so I was discharged. I flew back home the next day to see a Maternal Fetal Medicine Dr./ High-risk pregnancy specialist. They determined at that point that my placenta was partially covering my cervix, known as placenta previa. This occurs with about 2-5% of mothers and typically, as the baby grows, the placenta moves out of the way and is no longer an issue. They also noticed I may have placenta accreta. After having 3 c-sections within 17 months apart and my most recent being only 11 months prior, there was a LOT of scar tissue on my uterus. This can cause a placenta to adhere and grow into the wall of the uterus (not supposed to normally happen). In this case, the baby would need to be delivered earlier, around 32 weeks in order to prevent any complications for me. I went home and researched accreta, and called up my OBGYN friends. I found out most mothers with accreta end up having a full or partial hysterectomy upon delivery to stop the potentially fatal bleeding. It was a devastating  few days for me, thinking about all the possibilities of this pregnancy ending tragically. I was in a really dark place. Our boys didn’t even know I was pregnant, so as most moms do, I soldiered on.

The Night it Happened

Friday of that same week, the day was going fine. Camden took his very first steps, which I caught on video. I picked the boys up from school, my husband came home and my best friend Mary stopped by that evening. I remember sitting on the couch talking to her and telling her “this pregnancy might kill me”. I immediately started bleeding again. It had been going on all week but this felt worse, and I knew it was. I remember being in the bathroom thinking, “get to the hospital, before you bleed out and die”. As a medical professional, I do not panic in emergencies, nor is it in my nature to do so. If I panicked, I wouldn’t be able to think effectively. I called my doctor who agreed I needed to get to the ED. I calmly told my husband to get in the car, and hugged the boys goodnight. That was the hardest part. I wasn’t sure if I was going to see them again. Little Carter said “You’re coming back right Mommy?” That broke me. I knew I had to come back, they needed me.

Our amazing au pair and Mary took care of our boys while we headed to the hospital. I was feeling contractions, but I didn’t tell my husband how bad it was. As a physician himself, I knew he wouldn’t handle it well because he knows the prognosis of this type of emergency. I had already prepared myself for this being the end of the pregnancy.

At the hospital

When we got to triage, I walked in and let them know I was hemorrhaging. I told the nurses I was about to pass out and as I started losing consciousness, I felt my spirit lift out of me. I know this sounds dramatic, but that is exactly how it felt. I later read in my chart that they lost my pulse at one point. They called a rapid response on me. I’ve worked in acute care for 10 years of my career, and have been the one to call rapid responses many times on my own patients. Never had I been on the receiving end of it. They scanned the baby, and there he was… looking healthy, heart still beating and floating in an abundance of fluids. Me on the other hand…I was crashing, very rapidly. My BP was in the gutter and I was losing so much blood by the second. My OB came in and delivered the news I had already expected: the baby needed to be delivered or I could die from hemorrhage. I had mentally prepared for this ultimatum, my husband had not. This was the hospital he practiced in, and yet he was in the most helpless situation. All I could think of was our three little boys at home: almost 4 years, 2.5 yrs and 10 months old. They needed their mama to stay here on Earth. My husband needed his wife. There was no negotiation.

What’s strange to think about, is even with the most modern advances in medicine, women can still die from giving birth. Actually, maternal mortality rates are 17.4 per 100,000 lives births in the US, and more than double for black mothers. I knew that if the bleeding, or hemorrhaging reached a level that surpassed what they could control, I’d be gone.

My best mama friend, Jen, was by my bedside at this point. She was the angel on earth that my husband and I both needed. Jen and I had worked together as OTs in acute care, and she knew how to handle these situations like a pro…meaning she didn’t freak out over blood, bodily fluids, IVs, beeping of monitors etc. She was also a mother to two girls under 4. While my husband made calls to our family, Jen held my hand through it all (one nurse actually thought we were a lesbian couple, which brought a brief moment of comedic relief for us).

When they wheeled me to the doors of the OR, which I had been through three times before to deliver our sons, it felt like a dramatic scene from Grey’s Anatomy as I kissed my husband goodbye. They got me onto the table and I passed out again. I felt that same feeling of my spirit lifting out, and even had that aerial view of the operating room: me laying on the table, the doctors and medical team rushing around to hang blood and get me transfused. And then it all went black.

My doctor had prepared me that they would probably need to do a full or partial hysterectomy after they deliver the baby in order to stop the bleeding and prevent me from dying. When I opened my eyes in PACU, the first thing my husband said was “you still have your uterus”. The pelvic surgeon and my OBGYN performed a miracle operation and were able to save my uterus.  This may not sound exciting, but having a hysterectomy at 32 was going to be a VERY long recovery (which I didn’t have time for as a mom of 3) and also complications for the future. I was so happy about that news. They told me they almost lost me in the OR, and I had 4 units of blood transfused. I was alive and that was a miracle.

Jen, my bestie angel, stayed with my husband the entire time and held Coby while I was in surgery. The doctors prepared us that the baby would likely be a stillbirth, or as they say “born sleeping”. Instead, he was born alive and ready to fight, to everyone’s surprise. She sang to him, talked to him, and gave him all the love and affection that I would have. She was my proxy mama for Coby, which I am eternally grateful for. She let me know that he waited until I came out of surgery and then he passed, right before I woke up.

I don’t want to share on behalf of my husband because he had his own journey as a husband and father that night. I do not envy the position he was put in, what he had to helplessly witness and experience. Frankly feel I got the easier route since I was out for three hours in surgery, while he held our son. His grief process looks much different from mine, as most fathers vs mothers do.

Unlike the previous c-sections when I had an epidural, this one I was put under general anesthesia.  They asked if I wanted to hold him, and at first I didn’t because I was still very groggy and didn’t want to drop him accidentally.  The nurse gently encouraged me, which I’ll always remember and appreciate her very thoughtful phrasing…”I know you may not be ready yet, but he is the best state to hold him at this moment. If we wait longer, he may not be how you’d like to see him”. When I held him, I had another nirvana moment. Everything around us got dark, except the light around me and this precious baby. Everything got quiet, the beeping monitors, the chatter in the hallway, it was silent. If this was a space in between Earth and Heaven, this is what it felt like. God was present, I knew that. Our baby boy was gaining his wings. I felt this primal, maternal instinct to look him over, count his fingers and toes and imprint him into my mind, since it was the only lasting memory I’d have of him. And then I kissed him goodbye.

The days in the hospital were difficult. They put me on the general gynecology ward, not the postpartum floor, so we wouldn’t be around the other mothers and babies. I was in a quiet corner away from anyone else, with a butterfly on my door as a gentle signal to the outside world I had lost a baby. As a postpartum OT, I tried to practice what I preach to my clients who are recovering from delivery. Getting up and around was harder than my previous c-sections, because this surgery was so extensive. Most of the time I was alone, as I wanted my boys back home to be surrounded by love and continue their daily routine. I was having PTSD from what happened in triage the night before. I would obsessively check my own BP every hour at bedside and record it in my phone. I asked for extra lab draws to check my blood levels. I was afraid my H&H would drop and I’d have postpartum hemorrhage. It was terrifying to know I wasn’t out of the woods. My doctor did multiple checks on me, she was worried as well. “Had you not come to the hospital when you did”, she said, “we’d likely not be sitting here talking.”

Eventually I was stable enough to be discharged and come home.  Before I left, I had to make arrangements with the funeral home and the hospital to have his remains cremated for us. I didn’t even know they made urns that small. This is something I never in my life would think about needing to do. Leaving without a baby was so heartbreaking, I can’t even describe it. But leaving the hospital at all was a miracle, God saved me. My husband held onto me and guided me carefully into the car. When we got home my parents and our au pair had kept the boys awake so I could hug them. That reunion with these little monsters in my arms was a breath of fresh air. I think I needed that hug more than they did. “You came back Mama!”

Getting closure

I requested my full medical record from my OB and the hospital to comb through the details of what transpired. Disclaimer- this approach is not for everyone, but I needed it to fully gain closure. As an OT, we’re trained in reading medical charts, putting together the pieces and pulling out important information. I tried to look at it from an objective standpoint, as if this was another patient of mine. When I finished reading, I thought “that was a very sick mother”.  I had resolved in my mind that given the situation, there was nothing any of the doctors could have done differently in that fateful moment. It pains me knowing he was a perfectly healthy baby boy trying to thrive in a home with a shaky foundation, which ultimately failed him. I do not blame my body, it has created 3 beautiful healthy babies in under 4 years, and asking it to make another one was like asking someone to pitch a tent during a hurricane.
I’ve also sought the guidance of a faith-based psychotherapist specializing in loss. It has helped me fully work through and validate my grief process.

Moving forward and Remembering

The boys now know about Coby, in a way. They know there was another baby, he was their brother. Whenever they see 4 characters in a book or TV, they say it’s Chase, Carter, Camden and Coby.  We made a memorial butterfly garden for him in our backyard, since the universal sign of pregnancy and infant loss is a butterfly. So whenever the boys see a butterfly, they say “look it’s Coby, he’s coming to visit us!”. We have a beautiful baby urn on the mantle in the playroom, so he’s always there to play in spirit with his older brothers.

I have days that I think of him a lot, and other days, only for a brief moment. But everyday, he’s with us. Today may be the national remembrance day, but ask any parent who has lost, there’s not a day that goes by when we don’t think of them. I have collected all of my memories of this pregnancy and his birth in a special box. I found myself randomly stumbling upon an ultrasound tucked in a drawer and it would stop me in my tracks. This way I have a place to go to revisit those memories when and how I wish to.

A New Beginning

So that’s our story, that’s my journey. Raw and unfiltered. I share because I know it will help some other mother feel less alone in this. I share because more people should know that this happens, and more often than you realize. I share because it’s therapeutic for me.

To the mother who lost her first born, who doesn’t even know if she qualifies as a mother, know that you DO, you ARE. To the mother who lost by miscarriage and didn’t get to hold them, know that they felt your unconditional love. To the father who lost and doesn’t know how to cope, be there for each other and seek support together. To those who have a friend or family member who has experienced loss, just tell them or show them that you care. Don’t be afraid to say their name, it’s already on the mother’s mind, trust me. Don’t be afraid to just be present, even if the right words don’t come.

Resources for pregnancy and infant loss:

Facebook Group: Infant Loss

MISS foundation

Star Legacy Foundation

Griefshare.org

Resources for fathers:

Grieving Dads

Miscarriage support for Men

Resources for friends/family:

How to support a mother of loss

Here are some gift ideas that I was graciously given by friends that really helped me through:

Devotional book: Grieving the Child You Never Knew

Willow Tree figures

Picture book: The Rabbit Listened

Memory book: I love you still

Remembrance jewelry, candles, frames etc.

 

I hope you found these helpful. Please feel encouraged to connect with me and share your story or helpful resources via email (carolyn@therapeuticmiles.com) or on IG: @therapeuticmiles. You are not alone.

You are fearfully and wonderfully made.
-Psalm 139: 14