Why Is Pregnancy & Infant Loss Awareness Month Important To Me?

By: Derek Haake, Esq., MBA (Share Board Member)

The night we delivered our triplets 6 weeks premature because my son was stillborn, I sat in the house, by myself because we had no family within 400 miles of us. This meant we had no one to take care of our dogs that night, so I had to be home with them while my wife was in the hospital. I had stayed at the hospital with my wife. I had held one of our daughters, the one that was not on life support, and then I went home, not really knowing what I could do. I had talked to my parents, my brother, but now I just sat alone, the blessing of my two surviving daughters, even in their seemingly fragile condition nullified my emotions.

I sat, by myself in the cool September night simply lost.

After a while I decided to look at social media, and while I had not posted anything, friends had expressed condolences – the news had gone viral.

One post changed me forever.

A very good friend from college, one that I had lost touch with over the years posted a link and a website on my Facebook page. It simply said that it is time to stop the silence, time to bring infant and pregnancy loss into the open, and that the topic was taboo in our society – and it needed to stop.

I was taken aback at this. I thought to myself, “Why?” Why would we not talk about a loss?

Why would we treat this topic as taboo?   Why would we want to hide this? Why should we as bereaved parents be shunned into silence? Slowly the answers to my questions began to trickle in. As I got indoctrinated into one of the most horrible clubs you can belong to – if not the worst – I got the answers to these questions that I never wanted to know.

I immediately lost a handful of friends.

To this day I will never know why, but simply some people never talked to me again or even returned my calls after hearing the news. I do not know if it was too painful, if our friendship was not real. My best friend from high school told me that it will “be less work”. His attempt at finding some form of support for me hurt so much that I couldn’t even talk to him for six months – not that I was mad, it was the pain he inadvertently caused. My father, within a couple of weeks after losing my son, told me to “snap out of it” and “it’s not like you knew him.” He said similar things basically saying that he did not matter, and that hurt me in an incomprehensible way. He did not mean to hurt me, but he saw me floundering in grief and was worried about me – he did not want me to hurt and be in pain, but it was the wrong thing to say. I wrote him a letter, because I couldn’t talk to him, enclosed a picture of my son, and told him that yes, my son did matter, and that I would never talk to him about my son again, and for almost six years, I have remained true to my word.

I quickly began to drown.

My girls were still in the NICU and my wife was a wreck when she wasn’t caring for them. I needed to be a pillar of strength for her, but I had no support system for myself. I had returned to school and was working on my MBA. My friends from school did not understand, my professors punished me because of the loss and my inability to sit for two and a half hours without losing my emotional control. In short, the topic was taboo, I could not talk, and if I did, no one would listen.

I quietly and slowly reached outside of my network to find the support that I needed to survive.

My first introduction was with a group in St. Louis called Share. Share gave me some brief information, and put me in contact with another father who at the time was writing a book about loss for fathers. He told me in a lengthy conversation one night of what was going to happen. Chronic stiffness had already begun to grip my neck, and he told me the pain would worsen, that this was just the beginning. The emotions were going to grip my body, it would cause me long lasting physical pain, and the anxiety would overwhelm me. He told me I was going to think I was going to die, and that the grief would consume my being, unless I fought through it. He was completely right.

The pain in my heart, my mind and my body slowly manifested itself and grew in intensity over the next few months, but gradually left my body over the next two years.

The frequency and intensity of the pain in my mind and heart subsided, but the dull, nagging pain, while infrequent now, still exists almost six years later. The subsidence of the pain was a sad process as well, as I realized that my son no longer had the effect he once had on me, his memory was fading, and his existence began to lose meaning for myself. This was a sickening realization for me, the biggest fear for any bereaved parent is that their child would not have any meaning to anyone, and this became my reality.

It was a slow reality that began almost immediately after his death. I couldn’t talk about him, I couldn’t share his pictures, and I couldn’t share his story.

My wife had an artist sketch all three children so we could put a picture of all three of them on our wall – so we would not offend our guests by showing them a picture of a dead child. We walked on egg shells, protecting our emotions so as not to offend someone else. As, we watched high profile politicians and celebrities share pictures of their children on social media and get crucified we began to be more protective of ourselves, our emotions and our son. When Rick Santorum had a child that was stillborn newscasters made fun of him, made horrific comments and even one went so far as to say he took the child home and “played with it for a couple of hours or so.” When Michelle Duggar took pictures of her with her stillborn daughter, some commenters on social media lambasted her for posting them, for sharing her grief. Even a social psychologist commented, saying “From what I know of parents who have lost children, it’s horrific. It’s not something you want pictures of.” Of course, science has proven she is completely wrong.

The memories the hospital gave me – forced me to have – are my most precious possessions.

We were lucky, we had support at the hospital. The hospital staff almost forced us to take pictures, to spend time with our son, to have a chaplain visit, to do the uncomfortable and unnatural things at the time that would mean the difference to us as we travelled down the path of healing. I videotaped the birth, but when they were taking Charlie out, I stopped rolling the camera, and only took two still photographs of him – I don’t know why I did this. I think it was just fear of what I would see.

Thankfully we had people to help us from the first moments of our loss, but many people are not as lucky.

The science of loss has evolved dramatically over the last decade, and continues to change continuously. Many healthcare practitioners have not kept up with the science though, and often make mistakes because of their lack of knowledge that damage the parents irreparably in the long term. For example, years ago it was believed that the best thing for the mother was to immediately remove the deceased child from the room and never let the mother see the child – for her protection.   Of course this left the mother wondering about the child for the rest of her life, regretting an opportunity that she could have had, but was taken from her.

We had help, guidance and support. However, many – MANY – parents who join this horrific club do not.

My wife and I struggle with the things we did not do for Charlie that we think a mother and father should have done.

We never bathed him, we did not change his diaper, and we did not look into his eyes to see what color they were.   At his funeral, the funeral director gave us the opportunity to look at him and see him one last time. In an attempt to protect us, my mother-in-law persuaded us not to do this – and this decision haunts both my wife and myself because we lost this opportunity to say our final goodbyes.   He was buried in his coming home outfit, an outfit I had picked out for him months before he was born.   What did he look like in it?   These are the regrets that many parents are left with, regrets that will likely remain for the rest of our lives.

Sadly, many chaplains, physicians, nurses and other healthcare professionals are not aware of how to actually support parents during these initial moments. This is why awareness is so important!

Of course, the memories that were protected and preserved for us remained hidden away. We had them, but we found that we could not share them. We could not share our son, we could not share his pictures with friends. One friend told me it was “absolutely disgusting.”  I was overwhelmed. My walking on egg shells stopped after this.

His memory was too important, too precious, too limited, I decided that I needed – for myself – to share him.

It was a terrifying step for me, but ultimately worked. I began talking more about my son to people and began caring less about hurting them or making a situation awkward for them, and more about honoring my son, making sure he was not forgotten by me, or worse that I would disavow him for someone else’s convenience.

My newfound strategy of dealing with my grief and sharing my son opened up Pandora’s Box.   I quickly found that this club was much bigger than I had ever imagined. Business associates and random interactions quickly showed me the grim reality that it seemed like almost everyone I interacted with either had themselves or had someone close to them touched by a loss of a pregnancy or an infant.

I began to think, “If this club is so big, why is it that discussions of losses are shunned, secretive and hidden away in our own mental prisons?”

I still have not figured out the exact reasons, but my guess is, like me, many parents are fearful of the response, fearful of the rejection. Not that a stranger’s or even a loved one’s words are that damaging, but you go through so much pain that one more little thing will push you over the edge. Of course, the fear of someone telling you your child is “disgusting” is more traumatizing. My thought is it is this fear of this trauma that keeps people in silence.

This is why Pregnancy and Infant Loss Awareness Month is so important to me.

It is an opportunity for people to understand that they are part of a bigger collective, a club that has more members than we want to admit.   Members that want to protect themselves by pretending they do not belong.   Members that shoulder this burden in silence, and live a quietly tortured existence because they believe themselves to be alone when they are not.   Even healthcare professionals and psychologists that do not understand how to handle a loss, and the damage they inadvertently cause because of their ignorance.

Educating this frontline of defenders against emotional trauma is so important and this is why this awareness helps millions.

This is why in October I celebrate my son, it helps me remember him. I have found out over the last six years how meaningful his memory has become for others, because when I share him, it frequently becomes an opportunity for someone else to share their child, even if that child has not been shared with anyone but themselves for years.

---

About Derek Haake

Derek Haake is a serial technical entrepreneur, technical co-founder and also an attorney who advises small businesses on legal and the interplay of modern tech and the law.   Prior to starting his law firm in St. Louis, he was involved with several startup operations, including one that he was able to help become a public entity.   After this, he completed his Bachelors in Political Science at the University of Texas at Arlington, then went to the University of Akron School of Law and received his Juris Doctorate and a Masters of Business Administration.

Derek and his wife, Jennifer live in St. Charles County, and were introduced to Share shortly after they lost their son, one of boy, girl, girl triplets at 34 weeks in 2010 while living in Ohio. After losing their son, Derek and Jennifer both received significant help and support from Share which has helped them both substantially with their grief journey.  Now that they have moved back to St. Louis, Derek joined Share to help their mission to provide help and support for parents that find themselves in the inconceivable position that he and Jennifer found themselves in 2010.  Since the birth of their triplets, Derek and Jennifer had another daughter in 2013.