Update: I wrote the following a year ago after a friend suffered a horrible loss. It sat in Drafts, unpublished, until today. Sweet baby girl would have been a year old.
The baby passed away Saturday. It is Monday, two days later. It is easier to write the facts because the feelings get tangled somewhere between my heart, my brain, and my mouth. They ooze into place, they swell and won’t budge. It hurts. Pressure builds. My lip begins to quiver. My chin shakes. My throat feels oddly swollen. My eyes fill and I can’t see.
I try to speak but nothing comes out. I remember her picture, her beautiful face. The tears spill over.
The baby died Saturday. I am taken aback….
September 1988–one month pre-birth
“You’re due on about the 19th, but we can schedule it for the 12th. The doctor will be out of town on the 19th.”
Unless I’d switched doctors, I don’t recall feeling like I had a choice, a choice about the day of delivery. Who switches doctors that late in the game? In hindsight, not switching could well have been a fatal error.
But, we trusted. Every parent wants to think their doctor acts in their best interests, that he or she advises the soon-to-be parents to the best of their ability. In most cases, this is no doubt true.
I’ll take to my grave that we were not better advised in ours.
October 11, 1988–bedtime, the night before
“Do you think everything is going to be OK?” I asked my husband as I crawled into bed.
“Yes,” he stated, most assuredly.
Call it what you will, a mother’s intuition, but I knew. On some level, I knew.
I was already a mother. This was baby #2. Baby #1, 27 months prior, was born after 22 hours of labor. He didn’t want to exit the conventional way, so we met all 9 pounds and 2 ounces, all 20 1/2 inches of him, the unconventional way. We had to have a cesarean. Too much time had elapsed, the baby was too large, mama had grown weary.
With one cesarean under my belt and given the size of #2–not to mention our doctor was leaving–a week before the due date, on advice, we were scheduled for surgery.
And something felt wrong.
October 12, 1988–a week pre-due date
At precisely 8:05 a.m., we met all 8 pounds and 9 1/2 ounces, all 22 inches of baby #2. No two parents could have been happier. Big brother now had a little brother, and our family was growing. I had two little boys. I’d never seen anything more beautiful.
A little over an hour after his birth I held him for the first time. Little did I know it would be days before I would hold him again. Within hours, our infant’s life was on the line.
They told me I would see him before the transport. I heard it coming down the hall. The mobile unit keeping him alive buzzed and hummed. They parked him next to my bed.
I could only talk to him, touch his tiny hand.
Stay strong, little one. I love you.
After several minutes, they took him away, rushed him by ambulance to the NICU. A mere 20 hours after his birth, mother and baby were in two separate hospitals. Aside from giving birth, I had a hernia repair, an appendectomy, and a tubal. I was flat on my back, without my baby.
A day or so after our son’s birth, the doctor visited. I’ll never forget his question: “How did this happen?“
I was dumbfounded, and recall thinking, “YOU are asking ME?” I was speechless.
We’d relied on his expertise. We’d followed his advice. We’d nearly lost our son.
Andrew hadn’t been in the womb long enough for his lungs to fully develop. The effort it took to breathe punctured tiny holes in his lungs. Both had collapsed. Double pneumothorax is the medical term. He could inhale, but he couldn’t use the air; it simply filled up his chest cavity. A ventilator kept him alive, forcing 100 beats of air per minute into his tiny lungs, the goal, of course, to keep a steady supply of oxygen to the brain. A small tube was inserted in the side of his chest to release the inhaled air. They administered drugs to keep him paralyzed, keep him immobile during the procedures.
The double pneumothorax wasn’t the worst if it, we were told. The baby went into persistent fetal circulation (PFC) from the trauma, a condition more dangerous than collapsed lungs. Essentially, the baby’s system shuts down, reverts back to the circulatory system experienced when mom’s body was in charge. After a severe trauma, sometimes babies give up.
Andrew’s home for the next month was the NICU, and our days became a blur of hospital visits, test after test, and paralyzing anxiety. Every time the phone rang, I started to shake. Mama was falling apart.
It became a waiting game. He had given up, and my anxiety was growing by the day. Our beautiful baby was fighting for his life, and I was a wreck.
To their credit, the NICU nurses were fabulous. They see it every day; they recognize a parent who is about to crash and burn. One of them decided to reach out. She’d been watching me.
One evening, as I stood at Andrew’s bedside, she approached.
“There is a support group for the parents,” she said.
I could only stare.
“It’s a time for the parents to get together and talk about what has happened,” she added.
I said nothing.
“If you want the information, let me know.” She walked away, but I will never forget my next thoughts:
That is the DUMBEST idea I have ever heard. I have a husband and two year old at home, and you want me to waste my time sitting around, talking with complete strangers? This useless conversation has forced me to take my eyes off of my baby. Stupid woman. What is WRONG with her? Idiot.
Of course, I was the dummy. I should have listened and gone to the meetings. Over the next two years, I’d become a train wreck. The shock and pain of our experience sent me into a rapid, downward spiral. I did not talk when I should have; I realized–years later–I’d been propelled into the dreary world of depression. I simply could not think about me, could not take care of myself. I stuffed it down so far I figured it was gone for good. Wrong.
I had a very ill baby. That was my only concern.
One of those same nurses, thankfully, said something that–while I was loathe to admit at the time, and a hope I’d fiercely clung to–got me through.
“You know, when these little guys start to turn around, they do it pretty quickly.”
Another idiot. I’ll believe that when I see it.
She, too, was right.
Andrew soon began to need less and less help breathing, his numbers were good, he was very responsive. He seemed to like us, voices, touch, and food. He was coming alive.
His cheeks pinked up. He began to open his eyes.
He started to look healthier, less puffy from the trauma.
By day 16, he was looking at us, smiling, and chewing on his fingers.
We were able to take our baby home. We were unbelievably lucky. We know.
In no way do I pretend to understand the pain of losing a baby. It isn’t the same.
But I know the fear. I know the anxiety, the depression, the body shakes. I know the sleepless nights; I’d become a walking zombie. It scared me more than I can describe. It was the worst thing I’d ever experienced. It happened 26 years ago, but I will never forget. I cannot. He has been my teacher, my reminder.
Another mama’s baby died last Saturday. She was beautiful. Aside from the joy she brought her family, baby girl served a purpose to this mother, to me. Her mama is my friend and I ache for her, but sweet baby girl is my reminder.
She reminded me how precious life is, how fragile, elusive, slippery. She has taught us what matters, each other and to keep on loving. It’s seared on our hearts.
She is forever a part of us. Of me.
Rest in peace, sweet baby. You touched my heart.
I carry your imprint. ❤
Illustration and Footsteps book credits.
This story is very hard to look at. I also suffered a loss when my grandson, Gavin, passed away. He was 12 days old.Gavin was my first grandchild. It is devastating to the parents, and grandparents.
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I try not to think much about our ordeal–and I know, it is not the same; we did not lose our child–but, when I first saw a photo of my friend’s baby in the NICU, my experience and those feelings came back in torrential waves of sadness. I ache for all the parents and grandparents who have lost a child. It was very difficult to write my story (I cried all the way through), and to go public as well. I wrote it in part so my friend will always know I will never forget her daughter, not ever. People will never forget your sweet Gavin, either. Thank you for stopping by. 🙂 ❤
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Now I’m crying…it’s been 3 years and it still tears at my heart. God Bless your friend and all she has been through. She is lucky to have you in her life, you are a passionate person. Thank you for all your kind words.
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Hi Kelley, I see that some of your posts made it to me, but some did not. I just today found out that some of my messages went to my trash file without my permission. Yours above was one of them. I hope to rectify this and answer each one. Yes, I cried all the way through writing and reliving that one. It is horribly tough and for some, they never get over it. How can they replace the irreplaceable? I hope those in your family have found peace and a way to help heal the broken hearts. ❤
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Thank you so much karenlee for you kind words. They are in our hearts forever.
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❤
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🤗
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🙂
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Check your spam in your email and in your dashboad for wordpress. I found lots of Spam there. in mine.
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I check my spam file nearly daily on my dashboard so it’s usually empty. Most of the folks whose messages went to trash are people I usually correspond with; they are not spam. I am baffled….but thank you for the tip. ❤
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Thank you so much Karenlee.I loved your beautiful story
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You are very welcome, and thank you, Kelley. ❤
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Your story mirrors mine somewhat. My Dave is 29 now, but suffers CP, a cleft lip and palate (repaired) and developmental delays. I found out recently that I have a genetic clotting disorder and when the doctors asked me about Dave’s condition and I explained we’d been told there was an interruption of blood flow to the placenta early on in the pregnancy, my hematologist just looked t me and said possibly a blood clot? Ah, the guilt that it was even unwittingly my fault wars with finally having an explanation. But it is what it is… ❤
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Oh, the guilt, that is something I didn’t touch on (not really) in my story. I’d been sick at both the beginning and the end of my pregnancy, and had taken antibiotics (not willingly, but I’d started coughing and doctors did not want my infection to spread). I wondered somehow if that medication was somehow linked to the outcome. You begin to question EVERYTHING and the guilt sets in. Your genetic clotting disorder did not show up when you were first pregnant? I wonder if now tests are different than when we had our babies? Thank you for chiming in. ❤
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Never tested for it, I guess. My first pregnancy was normal and I had a couple of surgeries later with no problems. And I try not to let the guilt get in the way, cause it was nothing purposeful, but you know how it is 🙂 your story brought back lots of memories for me…
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If they only found your disorder recently, you are certainly not to blame, but that isn’t how it feels, I realize. We are the mothers, and we take on any and everything harmful that comes their way…the inherent, protective mode. I am glad my story touched you, and I hope the memories you spoke of were good ones. ❤
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Well, all the memories, I think, good and bad. No, we had no idea of genetic disorder until my brother (who has it too) had a surgery and developed a clot and they did blood testing about ten years ago. Sometimes I get a little melancholy because of my son’s struggles, but life is good! And, it’s just the way it is, right? Hope all is going well for you…
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I have a friend who recently told me (of her disabled child) that she felt blessed, that it could have been so much worse. Like you said, “it is what it is,” and we need to find the good. I love how you say “life is good!” 🙂 Yes, all is well here. Our son is now 27, almost 28, and he’s doing very well. When I look at him now and then those pictures, it is hard to fathom what he endured. How are things for you? 🙂
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Dave has had numerous surgeries and therapies over the years. But, yes, could have been much worse. He’s doing well, loves sports and his computer. His brother just built a house with a room and walk in shower so he can eventually move in there. So yes, we are blessed, too!
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🙂 ❤
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Reblogged this on Unmeasured Journeys and commented:
Have you ever faced a situation that was “iffy” at best? And, you maybe had to keep putting one foot in front of the other when you absolutely questioned whether you could even take a single step?
My friend Karen has. She wrote this amazing story about when her son was born and I wanted to share it with you. I know lots of mommas that have had babies in NICU and at times the outcomes have been bittersweet.
Thank you, Karen for sharing your experience. By doing so, you have given a voice to others on similar journeys.
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Thank you, Jess. I hope sharing my story helps people feel more at ease talking about their experiences. ❤ ❤ ❤
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Already has! 🙂
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This one hit a little close to home. Like you, I still have my son who is 48. I’m still astounded by the gift I was given. In those days, they took the baby from you with no holding allowed. I was told they would tie me to my bed if I tried to go the nursery. I did not touch him for 10 days until the miracle he was finally came home with me. The nurses did a wonderful job of doing more than their job to keep him going. They said he would probably be brain damaged if he lived. Losing him was something I finally had to get ready for. The moment I released him in my heart, was the moment he started to rebound and come back to me. I get the pain of losing a child. It’s not like anything anyone can imagine. At any stage, they are part of you. I can’t tell you how many mothers I know that have lost grown children and it changes them just as much. Deep, deep pain. You did a beautiful job of expressing this. I’m glad you still have your gift as well.
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Oh, Marlene, I can’t tell you how much your heartfelt comments affected me. Wonderfully written. Thank you. You nailed it: gifts they are. I am so glad you also have your son. Can I ask what his medical condition was at birth? And, you are so right. No one can imagine this unless they experience it; even then, we did not lose our children, our experiences were different. Our children were traumatized but we were as well when all did not go as “planned.” My hope in writing this post was that my friend understand that I will never forget her baby. Thank you for your wonderful comments. ❤
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My son was born with Hyaline Membrane Disease. Full term baby with underdeveloped lungs. It was 10 days before I was able to see or hold him. They were busy saving his life but I resented that I was not allowed to at least see him. I’m glad things are changing. If you lose a child, they are always still bonded to you, body and soul. It’s like nothing else.
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How awful, Marlene, that you were not allowed to hold your son. When Andrew was in the NICU for that month, we were there every single day, but many parents never visited. The reasons varied, but I wanted to reach in and hold them all. Broke my heart all over again. They arguably need human contact more than babies who enter the world without trauma.
You know, your comment above reminded me of my very first pregnancy. I lost the baby at three months. It was an awful miscarriage I had at home (but should have been in the hospital for). Then, the same thing happened three months later because the first was incomplete. I have thought about that baby for years. My heart told me it was a girl. I’ve never written about her until now. Her name was Whitney Lee. ❤
Your last sentence gave me the chills and the courage to write this message. Thank you so much. Hugs. ❤
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I’m glad you are opening up about the miscarriage. It’s no different than any loss of a child. Hurts just as much. I knew the nurses were working hard to save my son so I let it be. They did a good job and he knew that he was loved even though I never held him. Whitney Lee is a lovely name. Hugs.
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I was pretty devastated when I lost the baby, and remember not talking about it very much because people said things like, “You will have another,” or “You have plenty of time.” And I remember thinking, “But I am attached to THIS one” because “THIS one is my child, too.” I realize much about others’ reactions is because they simply don’t know what to say; however, for the mother, this is a devastating loss. I’ll always be attached to my Whitney Lee. ❤ So glad your son is OK now, Marlene. Hugs right back.
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So heartbreaking. I am glad your own story had a happier ending.
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Thank you, Amy. Yes, it is so hard to fathom losing a child. Visiting our son in the NICU every single day was a lesson in itself. Most of those babies’ parents did not visit daily. One of the nurses told us we were the rare family that did. THAT broke my heart. Some of those babies were not held as much as they could have been. We are in touch to this day with one of the nurses who cared for our son 27 years ago. 🙂
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How sad to think of babies not being visited and held by their parents. Perhaps it was a defense mechanism. We never know how we will react in these situations. I feel blessed that I never had to be placed in that situation.
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I have a funny story, Amy, on the flip side of that aspect of human contact. The hospital makes use of some fabulous hearts: volunteers. There are people who volunteer to sit with and rock these babies after they are out of danger and before they are released to go home. The day we took him home, we walked in the room to see our son was being lovingly held and rocked by an elderly woman. He was most content as was she. Because the pneumothorax traumatized his lungs, he still required oxygen. She was rocking over the cord leading to the tank. We let her know and she felt horrible, but he was in no harm. ❤
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Yikes! I am sure that having him a healthy young man today enables you to laugh now!
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It does. He’s now 27, and it’s hard to fathom anything so traumatic ever occurred. To look at him, you’d never know. I am sure being so lovingly held by that woman and talked to gave him more positives than a teensy bit less of oxygen did damage. 🙂
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🙂
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Beautifully written . Our babies are precious .
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They are, for sure. Thank you for your kind words. One can simply never take anything for granted after something like that. I don’t think I did before, but, this type of thing sure brings things into crystal clear perspective. I broke all the rules at my son’s school about having medication on his person during the day. I bought a tiny pouch which I sewed to a belt that he wore under his t-shirt. This is where he kept his inhaler. I wasn’t about to risk an event out in the field and wait for someone to figure it out and then run for help. With asthma, not OK. I instructed him not to tell the other kids, to never show anyone, and he didn’t. That’s how we got away with it. My thinking was that if it ever got out, they would have to deal with me, and after nearly losing him, I was ready for battle. 😉 At that point, I would have done anything to keep him safe. 🙂
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This well written story is at once heartbreaking and life affirming. Thank you for writing it.
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Thank you, Aunt Beulah. Your words mean a great deal. Thanks for reading. ❤
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Oh Karen, what a heart wrenching and emotional post to write, to remember and to relive. Thank God your darling baby boy survived and you’ve been able to see him grow up. My heart goes out to your friend for her loss at what must be a devastating time. xo
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Thank you, Miriam. Yes, we are incredibly blessed that our son survived that ordeal as well as he did. (The only complication is scar tissue at the base of one of his lungs, which, they tell us now, has nothing to do with the asthma he had as a kid. He was never without oxygen and therefore no brain damage or muscle tissue damage.) That was the first time my world had been flipped upside down, and it happened before I knew what had hit me. So hard to process any of it because I could barely breathe. Thank you for your kind words. ❤
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What a traumatic time it must have been for you Karen, even as it all unfolded so quickly. No doubt it’s one you’ll never forget. xo
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I won’t, Miriam, ever. It changes you and how you look at life (and, could it be that is the reason for it all? I’ll never know). The moment I saw a photo of my friend’s baby, I was transported back to our experience, and flooded with memories. I recalled that when our son was transported, because I was NOT thinking correctly, I did it all alone. I signed off on all the paperwork in the middle of the night, talked with all the doctors, before they took him away. I did not call my husband because I recall thinking “Someone needs to sleep, and my two year old needs to sleep; don’t wake them in the night.” I was a mess. But, my son survived it all and to have him today is a total blessing. ❤ Thanks for your comments.
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Perhaps it was all meant to be Karen, just as you said. We’ll never know but I’m a firm believer that everything in our life happens for a reason, and everything teaches us something, even when we don’t know what it is at the time. Warmest wishes to you and your family Karen xo
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I completely agree. In the thick of it, we often cannot see ANY benefit, even when we want to. For the difficult moments, I don’t cry easily; for the really easy, cheesy stuff, I can lose it in a heart beat. The energy it takes to maintain that control–or the illusion of–is exhausting. That is the danger zone for some. I guess we all deal with it when we can, when we are ready. Thank you again for your kind words. ❤
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So very true Karen. xo
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Sweet girl, super glad you found your courage and hit that publish button❤️ What beautiful, heart wrenching stories. When I got to his cheeks pinked up, my hand went to my heart and tears started rolling.
I am so sorry for your friend’s loss.
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Thanks, Jess. Back when this happened, I was so busy being a mommy I had no time to write; now I wish I had at least tried. I stuffed this so far down I was pretty much a wreck for my son’s first two years of life. Then again, one of the many things our ordeal taught me was to pick my battles, a realization I came to during his growing up years, their growing up years, I should say. I am grateful every day for the children I’ve been blessed with. Keeping those who have suffered loss in my prayers. ❤
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Any chance I could share this story? I have several friends with similar birth stories, NICU etc.
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If my story helps anyone experiencing this now, please do. Thank you, Jess. ❤ ❤ ❤
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Hugs…
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❤
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