Let’s talk taboo

You’re not supposed to talk about dead babies or how they died – it’s a taboo subject. It makes everyone uncomfortable, as it should. It plucks very delicate strings. It touches our moral fibre and puts impossibly difficult choices in our faces. But we should talk about it for all of the parents who suffer with guilt, pain, and self-doubt, and still don’t have their babies with them in the physical world.

I lost my child – my hopes for the future, and now I am terrified at the idea of trying to make more babies in case they all end up with a fatal disease like Henry’s. We’ll find out soon if that’s the case, and it’s normal for parents in our situation to be fearful until our future babies are actually born.

In the past few weeks, I’ve read about and had so many stories of loss shared with me – from miscarriages to stillbirths, and it makes me very hesitant to make any future announcements until baby is in our arms, smiling and kicking. But trying again is definitely at the forefront of our minds.

If you’ve been keeping up with my blog so far, you may have read the tears between the lines. Each post has been both very difficult and therapeutic to write. I know some of it is personal, and in my prior-to-Henry life, I would have been too shy and reserved to share so openly. But when you lose someone so precious as a life that you helped create, some of your old skin is shed, and you start becoming a new person. I have been avoiding spelling out clearly the decisions we made for Henry, and why we made them, and that is what I will do with this post.

On the day that we found out that Henry’s diagnosis was fatal, we howled in pain and agony. We wanted this baby so much. We were smitten and in love with our 21-week old son, and his room was already starting to take shape, and his brother was so excited to meet him.

After Henry’s first ultrasound where the doctor saw that his bones were shorter than they should have been at his stage, we knew we would be getting some news about Henry with the specialist, and we were hoping for something like skeletal dysplasia or anachronism – something complicated relating to bone growth.  We had managed to keep ourselves thinking positively the days prior to the diagnostic scan.

We knew there was a possibility that we could lose Henry, but we really had no idea until the specialist who did our ultrasound told us that he had osteogenesis imperfecta (OI) type 2, and life hasn’t been the same since.

I’ve been a mess of self-doubt; mourning the loss of my first child, trying to fathom the idea that I actually gave birth to him and left the hospital without him, and that I’ll never see him again.

As I write this post, I’m afraid you will judge me, especially if you are not pro-choice. I’m afraid you will think I made the wrong decision. We didn’t want to make the decision that we made. If you disagree, we respect that, and we thank you for respecting our decision in return. Henry is gone. Nothing you or I will say or do will change that, and how I wish it weren’t so.

We were given the choice in the hospital to carry Henry to term. Henry was going to die anyway – there is absolutely no way he was going to survive life outside the womb. If you look at the tab I’ve provided explaining OI type 2, the rarest cases see infants with the disease living up to a year with intense life support. They either die because their lungs inevitably stop working, or from insufficient caloric intake because the demands on their little bodies are too much. And these are the medical considerations without looking at his very, very fragile bones that had already suffered multiple fractures in my womb, and a few more as the nurses handled his frail, minuscule body after birth. Life would be nothing but pain for Henry until he passed away as every Type 2 case does, because it’s the only lethal form of OI.

At the same time that we were given the choice to carry to term, we were also told that we could terminate the pregnancy, and whatever choice we make is the right one. The English language doesn’t have sufficient vocabulary to express the depths of our grief, sadness and shock at our options – both which ended in never seeing our son grow up and thrive.

Choosing to stop a life isn’t something we took lightly. We were praying and hoping for anything but a death sentence. We would have absolutely loved and cherished any form that our baby came out. We would have been bursting with pride if we were going to have a disabled baby, a baby with Down Syndrome, a baby with dwarfism, a baby that would have needed to be in a wheelchair for its entire life, a deaf, mute baby with a deformed head – ANYTHING! But that’s not the hand we were dealt.

We were stunned, sitting in that dark ultrasound room, choking between heavy sobs at the reality of our situation, wishing and praying with everything we had for this not to be true, but we had a decision to make.

I was lying on the ultrasound table with my shirt and pants still tucked up and down, with a towel draped over the ultrasound goo still covering my belly with the image of our dear sweet boy still on the screen when we were gently told what our options were. The support staff said that we could stay at the hospital to gather ourselves (it was morning, and we still had to see a genetic specialist later that afternoon), and we could even have a private room to ourselves, or we could go home.

I didn’t then, and I still don’t have the capacity now to make even the simplest decisions, but somehow, we decided to go home during the break. That car ride was the longest of my life, and I cried, sobbed and howled  the entire way. Looking back now (and this was only a little over a week ago), all I remember feeling is a numb buzzing. I didn’t feel completely in my body due to the trauma and shock of the reality that, no matter what we decided, our baby was going to die.

Through the fog, we made the decision to terminate our pregnancy. We were given a choice of days to come in for the procedure. They originally suggested the Wednesday of that week (so far, everything I’ve written happened on the Monday), but I asked for Thursday because Wednesday was our sixth anniversary. We had two last days with Henry, and I savoured every kick, blip and wiggle he made.

Every day was a river of tears, leaving nearly every pillow in the house soaked through and having been screamed and yelled in repeatedly. We played Henry music, we read to him, we told him how sorry we were, how beautiful he is, how much we love him, and how much we’re going to miss him – over and over and over. I still do.

On our last night with Henry, I felt like I was going mad. I DID NOT want to go through with the procedure. I didn’t want to say goodbye to my son, who was still very much alive and kicking inside me.

It was torture, madness, against every fibre of my body, against my instinct as a mother – to love and protect and cherish my little one. It was against my belief in giving everything I had – of not giving up, of finding solutions, of getting support and help, of helping those in need. I was diving in to a situation where, to let myself go through with it, I had to turn myself off.

The only thing that helped me through these horrible few days was that we learned that doctors suspect that a fetus doesn’t feel pain until the 22nd-24th weeks of pregnancy. It’s what the doctors at Sainte-Justine Hospital told us, and is also what this Discover article discusses.

We tired to see it as our only gift to Henry – that we were stopping his life before the neural connections that let you feel pain are fully developed. And at 21 weeks, we were right at the cutoff point. Of course there is no way to know for sure, but this knowledge, even if it’s just suspected, gave me a great deal of comfort. As Henry’s mom, this was the only way I could protect him. But I still have to work very, very hard to convince myself that it was the right thing to do.

The morning of our scheduled termination came, and I have no idea how I walked out the door of my house. My mom came to get my partner and I to drive us to the hospital. We sat in a suspended silence, waiting, waiting, waiting.

When I was finally called in by the doctor, I first had an amniocentesis so that they could study and replicate some of Henry’s cells (we had agreed to let them use Henry to do an autopsy and to study OI type 2, and our amniotic fluid was going to help them get a better picture). I had my eyes closed during this procedure because apparently, the needle is really, really long, but it didn’t hurt. Then, they showed us to our room.

We had a roster of interesting nurses. Some were a bit quirky and got on my nerves, and others were very sweet and gentle. I had my vital signs recorded every half hour for the entire time we were there (around noon Thursday to 5:00 p.m. Friday). I asked for painkillers only twice – I wanted to savour every last moment I had with Henry with my senses intact.

I suspected that he died sometime in the night, because the induced contractions would have deprived him of blood and oxygen, and, at 21 weeks, a fetus is not viable due to immature lung development. I was very bloated, and I couldn’t feel him anymore.

I was hooked up to an IV to have a constant flow of antibiotics in my body, and, every four hours, had a pill inserted vaginally that induced my contractions.

My partner loyally stayed by my side and in shock the entire time. He felt bad going to the cafeteria to get some food, and he said that he felt nauseous, too.

My water broke after the fifth pill insertion at around 8:00 a.m. Friday morning. I had one last pill strategically placed inside my cervix, then, at 11:00 a.m., I felt Henry descending. I called the nurse, and Henry was delivered at 11:13 a.m. Our beautiful son was born, but he was already gone.

Because he was a very immature preemie, his tiny body was entirely red, and light as a feather. And because of his condition, he didn’t really have a skull. His head was very mushy, and even though he was already gone, I barely touched him while I held him because I didn’t want to hurt him. His left leg was already badly broken, and his delicate skin already had some tears. It then took me  nearly two hours to deliver the placenta, then, as soon as we could, we left the hospital, though we were encouraged to stay.

I didn’t cry during the procedure. I wanted to be strong for Henry, and deliver him so that he could be free. Thanks to our state of shock, my partner and I even cracked jokes, watched TV, and just existed during our stay at the hospital.

We were visited by a psychologist and were given pamphlets and coping strategies and contact information for support groups, and a precious white folder containing a card with Henry’s footprints, and the blanket they swaddled him in while we held him for a few brief moments before we said our final goodbye.

This, my friends, is what hell feels like. And as the days go by, I feel very strange doing regular things since ending my pregnancy with Henry. I look at my belly in the mirror every day to snap myself into the reality that I’m no longer eating, walking, and breathing for two. It’s just me now. I feel guilty reading a book because I travel to the story, leaving thoughts of Henry behind. I’ll watch a movie, and then reality sets back in when the credits are rolling. I’ll shower and eat, but, why?

I’ve been listening to relaxing classical music every day to soothe and change my state of mind. We are even testing doing ‘regular’ things, like going for nighttime walks so as to not run in to anybody, and we even went to see a movie last night, but it felt very, very strange, especially since there were children there. I am living in a Henry-less void – seeing parents spend time with their sons and daughters in a way that I will never be able to do with my child.

This was a difficult post to write, and I’m publishing it with a lot of apprehension. I welcome any discussion that comes from it. It isn’t a cry for pity. I’m not sure what it is, but here you go.

With love,

Mel

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7 comments on “Let’s talk taboo

  1. Anonymous says:

    I would have done the same my love *sigh*
    Love is about thinking of the other’s need above your own
    and you did

    • Mel Lefebvre says:

      It reminds me of the types of conversations you have when you begin exploring your moral boundaries, like – what would you do if you were in a burning building and you could only save one person – your mom or your boyfriend – type of thing. I quickly realized that trying to figure an answer to questions like that was stressful and dumb, and that I’d probably cross that bridge when I got there. Lo and behold, I got there – let my baby be born and live for only a couple of minutes and die of respiratory or cardiac failure, or stop it before the doctors think it starts to hurt?

      Anyway, thank you for your comment and for supporting me and Tyler. This experience has tested my limits with decisions and emotions and life.
      xo

  2. tersiaburger says:

    My 38 daughter was born with OI – Type IV. I have selfishly fought to keep her alive for many years. Her tissue is affected by the OI and blotched back surgery has resulted in 80 abdominal surgeries. I wish I had been selfless enough to let her suffering end earlier in her life. Life is the wrong word – Vic only breathes – she has not lived in a very long time. Vic is now terminal and we decided that she will not have any further life prolonging treatment. Please know that your selfless decision saved your Henry untold misery and pain. When you weep, weep for your loss but rejoice in Henry being spared pain. I hope you will find peace and healing. You are a brave mommy.

  3. Mel Lefebvre says:

    Thank you so much for your comment, Tersia. If Henry had anything but the fatal form of OI, I would have fought the same way you have been for Vic’s life. I don’t think you’re selfish at all – I think you are a courageous fighter who has done everything in her power to try and help her baby (no matter how old ‘baby’ is). I’m so, so sorry that you, Vic, and your family are suffering. It isn’t fair. Henry’s skin was as delicate as tissue paper, I can only imagine what his internal tissue was like – probably a lot like Vic’s.

    Thank you for sharing your own story. It helps me feel more brave.
    xo

  4. Thank you for sharing Henry. Thank you for sharing your story and just how hard all of those moments were/are/will always be. One of my triplets had spina bifida, chiari malformation, hydrocephalus and club feet. We had two weeks of hell making choices for her and her life before I lost all three at 22 weeks. Those choices were over. Taken from us. I celebrate the reality that she never had to endure surgery or pain although I grieve her loss every moment. I was told to selectively reduce when we first found out about the triplets. I was put in a position to chose two lives over one and of course at that time had no idea about sweet Alice and her problems. I couldn’t make that choice no matter how I looked at it but that doesn’t mean I didn’t contemplate it although I never imagined I would ever be faced with that in life. Your “would you take your mom or your boyfriend/husband” analogy rings true. Would I try to save two by killing one? We were faced with the same choice again when we learned of Alice’s conditions at 20 weeks. If we killed her the other two had a better chance. Again – we couldn’t make that choice – and again – no mother/parent has the right to judge that choice until they’ve walked in those shoes. Period. I admire your courage for writing this. I haven’t yet written our story.

  5. […] written about what happens next in detail in other parts of this blog (here and here and […]

  6. misscookas says:

    How utterly heartbreaking and yet so beautiful that you chose to let Henry fly away before he could feel the pain. You, my friend, are what they call a hero. Thank you for sharing Henry’s story. He’s found a little place in my heart today. And so have you. xxx

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