The Words No Parents Want to Hear

“Everything I see leads me to believe there is something wrong with your baby.”

I don’t know what it’s like to lose a parent or a sibling. I’ve never been in a battle where I’ve had to fight for my life. So I consider myself very lucky that I haven’t truly known true fear. But yesterday that all changed. Because I’m telling you right now, the fear you feel when someone tells you there’s something wrong with your tiny unborn baby is a paralyzing feeling the likes of which I’ve never experienced, and wouldn’t wish on my worst enemy.

MJ went into yesterday’s appointment already convinced of the worst. Call it Mother’s Intuition if you want, but she was POSITIVE there was something wrong. I tried to calm her down and managed to get her into a reasonable state of mind as we entered the office. But I knew the moment of truth would be the minute that little hologram popped up on the ultrasound machine.

I don’t pray, but I hoped like hell the first thing we’d see is that kid spread eagle. I had it all planned out in my head. The tech would smile and reassure us, showing us the baby’s legs were separate and flailing away. MJ would shed small tears of relief and I would say “See? Told ya so!”

But it didn’t work out that way.

When the fuzzy image came into focus, it looked exactly the same as it did Wednesday. MJ asked if the legs were separated but even I could see the answer to that was no. And when MJ saw, she lost it. She immediately started crying and sniffling. I gripped her hand as tight as I could and told her it doesn’t mean anything yet. After all, this was only the ultrasound tech. We hadn’t even seen the doctor yet. He would take a look and find that everything was OK. I refused to shed a tear and I convinced myself the doctor would come through for us. I was going to will this baby into acceptable condition. I clung to that.

The doctor came in and immediately started asking MJ a barrage of questions about her health history. It became abundantly clear that this guy might be an expert in examining ultrasounds, but some etiquette and sensitivity classes would’ve also been a worthwhile investment. With deft skill but horrible manners, he viewed the baby from every possible angle as MJ and I struggled to keep our shit together. Then he stopped and looked at us.

“The fact that the legs do not separate and won’t move is highly unusual,” he said. “It leads me to believe there is some kind of lower extremity defect.”

I’m not a religious person and I’ve never believed in heaven or hell. But there is a hell. Hell is sitting next to the person you love most in this world and listening to her wail hysterically because her heart just broke into a million pieces. Hell is watching her entire body convulse with sobs as she screams because she’s being tortured with grief. For as long as I live and no matter how many children we have, I will NEVER forget that sound. Ever.

I tried to hug her, to hold her hand, to console her in any way I could. But she just pushed me away and screamed at me to get away from her. In that instant I was completely powerless. My baby is sick and there is nothing I can do for him/her. Nothing. I can’t even hold the baby to comfort it. My wife is devastated too and once again, I’m powerless to do anything about it. I couldn’t make her feel better no matter what. I can’t fix my child, I can’t comfort my wife…that feeling of helplessness is crippling. And terrifying.

The only thing I could do was flip my switch. I went from being a parent to being a newspaper reporter. It’s a defense mechanism that allows me to do my job in some of the most emotional, saddest situations possible. And while it’s usually reserved for fatal accidents or knocking on the doors of grieving families to interview them about a lost loved one, this time it was a quest for information concerning the health and well-being of my future son or daughter.

I asked how unusual this was. What’s the next step? What are some possible diagnoses? What are our options? When can it be narrowed down? I asked every question my frazzled mind could muster.

Unfortunately, there really aren’t any answers right now. It’s too soon to know specifically what’s wrong. The only way to do that is wait a few weeks for the baby to develop and grow, so doctors can get a better look. So in 2-3 weeks we’ll have an amnio done which should be able to tell us what we’re up against. But the problem with that is we can do nothing except have this damaged child grow inside of MJ for the next month while we figure out what’s wrong. I have no idea if it’s going to be fatal. Or if it’s going to put MJ at risk during delivery. Or what kind of quality of life this child can expect if he/she does survive.

But to be honest, I can’t think about any of that right now. There are too many unanswered questions at this point so to try and answer all these hypotheticals would just drive me unnecessarily insane.

That’s why on the way home from the doctor’s office yesterday, the only thing MJ wanted was Will. Unfortunately he was an hour away staying with my aunt. So I dropped her off at her mother’s house and told her I would get him ASAP. I hugged her tight and swore to her that everything would be OK, even though that felt like a blatant lie. And I held it together long enough to make sure she got inside. Then I turned the car around, drove out of sight, and completely lost my mind.

I cried. I sobbed. I openly wept. I pulled the car over to the side of the road, put it in park, got out on the side of the road and fell on my knees. And then I threw up. I didn’t care who saw me or how I looked. I didn’t care about anything.

Eventually I made it my aunt’s where she was waiting along with Will and both of my parents. I held it together the whole time I was there. I hugged them all and I saw the love and concern in their eyes and heard their words of encouragement. And while I appreciated the sentiment, none of it mattered. I just wanted my son.

I put him in the car seat and hugged my family goodbye. I drove away but pulled over down the road a bit. I got in the backseat with Will and I told him there was a problem with his little brother or sister. “Brother sister” he said excitedly. He likes to give kisses to MJ’s belly and last week he even tried to share monkey — his most prized possession — with his sibling in mama’s stomach. The smile on his face as he spoke of his brother and sister might as well have been a knife twisting around inside my chest.

I broke into tears as I told him he might not get to be an older brother. I laid my head and all of my problems in the lap of my poor 2-year-old son. When I glanced up Will looked a little stunned and concerned. I wiped the tears from my eyes and told him I was sorry. And that’s when he grabbed my hand, looked me straight in the eye and said “Dada, it’s OK.”

To be fair, the Hallmark moment was ruined seconds later when he inexplicably slapped me across the face. But still, it was incredibly sweet and something I’ll never forget.

MJ and I both took the weekend off from work. I just can’t function properly right now. When I woke up this morning I was happy for a fleeting instant because I thought it was all a dream. But then I remembered my world is now upside down and the nightmares take place during the waking hours, the only reprieve coming at night.

I have no idea how this will turn out. We’ll get as much information as we can over the next few weeks and make the best decision for our family. I just hate this. I hate feeling like I’m cursed. With the exception of Will, the last few years have been nothing short of fucking miserable. MJ lost her job and had to take another with a significant cut in pay. Our finances suffered to the point we’re on the brink of declaring bankruptcy. We’ve borrowed thousands from generous family members that we haven’t been able to pay back. MJ was diagnosed with Crohn’s an other serious medical conditions. We went through two miscarriages before Will was born. MJ suffered through hellish postpartum depression. Will gets kicked out of daycare and then a day later, we find out there’s some horrible defect with our unborn child.

And each time I try to reassure MJ that nothing else can go wrong, something does. Each time I tell her things can only better, they get worse. I don’t have any more optimism in me after this. The fact that my poor unborn child is cursed with some kind of freakish defect after we’ve already suffered through two miscarriages is proof that I am not destined for normalcy or peace of mind.

But why not? When is it going to be enough? Am I literally going to pay with a pound of flesh in the form of my unborn child??? I’ve fucking had it. I don’t even want fame, fortune and riches. I just want to avoid devastation. Is that really too much to ask? I don’t think so! And I don’t want to hear about God’s plan, or God not giving people more than they can handle, or what doesn’t kill us makes us stronger. Bullshit. God is crap, this is more than we can handle and what doesn’t kill us only weakens us and leaves us even more vulnerable for the next fucked up thing that happens to us.

While I don’t know how this will all end, I know it won’t end well. Because in the end there are two choices we can make and neither one is appealing. But both are daunting and terrifying.

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48 thoughts on “The Words No Parents Want to Hear

  1. Love each other through this. It’s the only way to survive all the grief. My best wishes to each of you. Your nightmare is everyman’s; hopefully, sharing will help ease your pain somewhat.

  2. Keep in mind that this baby will think it’s normal to be whatever he or she is. You see it as totally odd, misformed, whatever, but the kid won’t think so. It is what it is.

  3. I’m sorry to hear this. I was following your tweets yesterday and was hoping for the best. I can’t say I understand or really even try to give any words of encouragement for what your going through. When my son was born at 30 weeks and was in the NICU for 6 weeks, it was one of the most difficult things I’ve had to go through, and yet it pales in comparison to the challenges you are facing.

    Good luck.

  4. It’s scary and humbling, the way you have shared this baby’s journey so far. Scary that anyone would have to go through this, and humbling that you are willing to put yourself & your fears out there for us.
    Know that somewhere in cyberspace a hundred moms from the BBC are praying for you guys and a family out in California is too. Hug Will harder today and let MJ know that you love her.
    We’re thinking of you all you guys.

  5. Dude… there’s nothing to say other than I can do the best thing I can do for you… and that’s to pray. I know that’s not at all what you want to hear but you don’t know me from Adam and in my life I’ve been through my hard times and it helped me so I’m sending it your way. That being said… It’s okay to be pissed, it’s okay to be mad but know that you’ve got people out there thinking about you or praying for you (either or). Your story was raw, heartfelt and makes me crumble dude… I’m so sorry…

  6. There’s nothing worse in this world than having your kids in pain or trouble and not being able to do a damn thing about it.

    We love you all, we’re here for you, and whatever you do is the right thing.

  7. Don’t even know what to say other than that my heart is breaking for you guys. So sorry you’re going through this.

  8. Last night, when Matt was asleep, I sat down on the couch and told Dave about the you’re tweets yesterday. I told him, as I cried, that I can’t imagine how you both must feel and how, although I haven’t been close with MJ in years I just wanted to tell her how sorry I was that she (and all of you) are struggling right now. I wanted to say anything to make it better and yet there are no words. We went back and forth about what we would do, if it was us, and how we would feel and we came up with nothing. Paralyzing fear. That’s all I’ve got. I am sorry that there is no way for us to help, no way for us to make it any easier. Please know, and please let Martha know, that our hearts are breaking for you both right now and we are thinking of you both and wishing you strength as you go through all of this.

  9. i am so so sorry to hear this news. i can’t imagine what you and your family are going through. i’m sending thoughts and prayers that you get some answers in the next couple of weeks.

  10. Fuck. I don’t remember how I found your blog, but I’ve been reading for just a few days and thinking about you and your family and remembering my own terrifying experiences with high risk pregnancy and “fetal abnormalities”, not knowing if my baby would survive, what her quality of life would be, how I would ever ever cope with the grim reality of our situation. I’m not going to offer you stupid platitudes or shit you don’t want to hear. When people did that with me I just wanted to punch them in the throat. But I will tell you that I get it. And that you will find a way through it no matter what happens because that’s what parents do. It fucking sucks. It’s not fair, it’s bullshit, and there’s no reason for it. I know how trite and useless “I’m sorry” sounds; those words aren’t nearly big enough. No words are big enough. But I am so damn sorry. I know your pain. And I am so fucking sorry.

  11. I just don’t even know what to say, other than sending you love from a complete stranger. Our whole family is thinking of yours right now.

  12. Thank you all. I should be able to think of more to say but sincerely, thank you. Just knowing this kind of support is out there is unbelievably reassuring.

    Writing is my therapy. It’s how I get through things and deal with them emotionally. And having you all here with us for this would appear to be intrusive to most people, but for me its so helpful. So again, thank you. You guys are the best.

  13. Aaron and MJ,
    I just wanted to say something to show my support. You know I’ve been following and reading your blogs for so long (before daddy files) and now my husband is following along with concern and sadness in hearing this news. I like what one of your posters said about the baby not knowing what he/she has or how they differ. But I know that all that matters is the pain and the feelings you’re enduring right now. I’m so, so sorry. My heart is aching for you all. I hope that through the cloudiness something good comes out of this all…

  14. As the parent of an 18 year old born with issues, and the mother of a 9 year high risk preemie who spent 58 days in the hospital signing a DNR every 7 days. I am lucky. I hope you will get a top notch TEAM of Perinatologist like I had that had groundbreaking life saving/changing skills and procedures I have no words to help you, there are none right now. I simply want you to know so many are thinking of you and your family right now.

  15. There are no words. Not enough I’m so sorry’s. My heart aches for all three of you. I’m not religious either, but it’s so so important to be honest with yourselves about what you need right now. One another, Will, someone to talk to, and whatever else you might need. It’s an incredibly difficult time, an incredibly difficult decision. I know my thoughts are with you all the way.

  16. I feel the same way about god as you do…which leads me at a loss for words when something like this happens…because nothing rationale will help. But I’m thinking about you.

    And KC is absolutely right with his comment.

  17. You’re right. There are no words. Nothing any of us can say will make this any better/easier/disappear.

    But we can let you know we are here for you and you are not alone.

    After my daughter was born with a cleft palate when everything was supposed to be okay, I wailed the next night when the reality of it all slammed into me. Wailed ceaselessly, soaked the pillow and then I passed out. This was NOT what I signed up for. Not at all. It was fucked up beyond belief and I wanted to strangle someone. Why me? Why the fuck me? I wanted to leave her at the hospital. I couldn’t do this. God was crazy to think I had this in me. And once I was released from the hospital after giving birth, all I wanted was to hold our other daughter (who was 2 at the time). And that was fucked up too because – well, I’m the grown up. Seeking solace in a 2yo. How messed up is that??? I felt horrible for her, for us, for our daughter. But it was what it was. And at the time, I was scared shitless because I had no information – no one told us anything – just that she had to go to NICU in Atlanta right away.

    Know that my heart is praying for you constantly along with many many others.

    Sending lots of love and support to all of you.

    Warmest,
    Lauren

  18. Very sorry to hear what you guys are going through. Just don’t know what else to say except my family is thinking of yours right now and will continue to do so in hopes of you all getting some answers soon.

  19. I’m so sorry about the day you had yesterday. I’m sending lots of love & strength & hope that you get good news in the next ultrasound & all will be ok.

  20. Wow….I wish you all the strength in the world to get thru this/to trust in your beliefs and decisions/to continue to love one another as you go thru this horrific time. I’ve had many losses, and with each one I feel I cannot take anymore…Life can be so unfair….there is no reason for these things-I don’t care HOW one tries to rationalize it. Just know that you have many supporters…even tho you don’t know us from Adam….we are here for you. Cry all you want, scream as loud as you want…do whatever makes the pain less. Hugs to you all.

  21. I’m so sorry.

    I know how you feel, and yet I still don’t. I have thought about you every day since I heard. My devastation at reading this blog is nothing compared to how you feel. I wish there was something more I could do.

    You, your wide and children are foremost in my thoughts. Sending all my love.

  22. I don’t believe in God. But, I also don’t place total acceptance in modern science. There is too much to know and many more things we don’t know than do. I can’t cry for you and I can’t pray for you, but I can empathize with you. I am genuinely sorry to hear your news but sincerely glad that you have given the rest of us the chance to hear it. I don’t know what I would do in your circumstance, and even if I thought I knew, it wouldn’t do you any good because you have to do what is right for you. I just empathize. I’m sorry.

  23. You’re right – you are living one of every parent’s worst nightmares. When you said you woke up and thought it was a dream but then realized it was your reality – I could relate to that – though only because my dad was diagnosed with pancreatic cancer and I remember feeling like I was carrying grief around like a suitcase with me.
    That is nothing compared to what you and your wife are going through. I will pray for you all – and think of you all – and hope that you are able to help each other through this. None of that sounds anything but trite – I’m sorry.
    I am so very sorry.

  24. My heart goes out to your whole family. This is hard stuff.
    However, what if this child is born with a sharp mind and the ability to climb mountains, h/she just has a minor/major disability in their legs to get in their way?
    You used the words “damaged child” “I’m curse” “horrible defect” and “poor unborn child…freakish defect” and referring to this situation as “a fuck up thing.”
    Those are fighting words. And someday your child may be able to read this, (or your other children) and that makes me sad.
    You guys got s short stick. This stinks.
    But this is YOUR CHILD. Perhaps not perfect, physically, but it’s your CHILD.
    Maybe you can turn your pain into grace.

  25. Hey Shelly: perhaps you are someone who reacts perfectly and flawlessly to life-altering situations. Maybe, somehow, you were born with DNA that includes PC answers to everything in the heat of the moment. Or maybe you’re just such a better person than I am. If that’s the case, congratulations. You win.

    But guess what? If you couldn’t tell, this post is me dumping out all my unfiltered feelings. And some of those feelings are anger. Yes, this child is damaged. That’s a fact. We don’t yet know the extent. So maybe its not as bad as we fear or it can be fixed. Or maybe not. If this baby makes it and years from now reads this, I won’t shy away. I’ll explain what was happening at the time. But what I won’t do is censor myself right now.

    But don’t talk to me about grace when you’re criticizing me in the immediate aftermath of trying to make heads or tails of all this.

  26. DF,
    I have four children of my own, and not one of them is perfect. Nor am I. But I would never use those words to describe any of them. I’m not attacking your pain. I’m not walking in your shoes, I don’t know what you’re going through. It must be very hard. And I’m sorry your family is dealing with this.

  27. Aaron, We’ve never been too friendly on Babycenter, but I am so incredibly sorry to hear about this. I am thinking of you and your wife and hoping for the best. Hang in there.

  28. Aaron, I am so so sorry you are going through this. I can’t imagine the pain you and MJ must be going through. Reading this broke my heart. Your family is in my thoughts and prayers.

  29. I’m going to go out on a limb here and say that this journal was raw emotion speaking. I know I personally would feel everything that Aaron expressed were I going through this. I think the last thing Aaron and his family need are people criticizing that or telling him what he should think, feel or how they should act. I think the best thing that anyone can do is offer 100% support for what Aaron and his family are going through and are going to have to deal with for the rest of their life, no matter what decisions get made. I have the utmost confidence Aaron and his family will decide what is best for them – and that’s the ONLY thing that matters.

    Aaron, I’m so so sorry. I hope that you get some more concrete information in the coming days ahead. I’m thinking of you and your family.

  30. We are so sorry to hear the news. We are praying for all of you, your family and each of you. Hugs and kisses to MJ and Will. We love you guys.

  31. aaron,

    i’m holding you close in thought, and doing my best to channel supportive and healing vibes. i’m glad you’ve given us your uncensored thoughts. from what i know of you, that’s the only way you operate. and you know what? i liked that about you. a lot.

    you’re a passionate and talented man. and a strong one. whatever course this may take, your (understandable) anger, i suspect, will turn into resolve and you will lead your family through this.

    please keep us posted.

  32. This so sucks. I am sorry, and you are in my thoughts. Here is to hoping its not as bad as it seems right now.

  33. Yell. Scream. Cry. Vomit. Do it all. Do none of it. It’s ok.

    Right now, I feel like all I have to say to you is that It’s ok. This news is awful. Awful news expects, and deserves and emotional response. Do what you need to do, to feel what you need to feel. It’s an important part of the process and something I wish someone had told me. When you, and your wife are ready – Do whatever testing you need to do. The time that passes will be hard, it will be long and it will be filled with what-ifs, and many, many why’s.

    Do the tests. And then, armed with Knowledge you can decide what your next step needs to be. Until then, feel whatever you need to feel. Be safe in the knowledge it’s ok. And anyone who judges you, or MJ, during this time for how you react should seriously reconsider where they stand in your life.

    Sending Prayers, and Love

  34. Oh shit. I read your other post before this one. I was trying to be light and fluffy with the second child comment b/c my experience having children tore my marriage and entire life apart to the point I even temporary lost my mind, some family and a friend.

    I do pray. I am praying. I have grown to love your family and think you are a very talented and truthful writer. At times like this you need all the help you can get. I’m so terribly sorry you and mj are worrying and have such a heavy heart.

    Much love….
    GG

  35. I can’t imagine what you are going through and what the next couple weeks will be like. The situation is absolutely heart wrenching. Your family is in my thoughts.

  36. Stumbled across your blogs a year ago or so and keep coming back for updates since we also have a son that was born in April 2008. You and your family will be in my prayers.

  37. I’m so sorry for all that your family is going through in this difficult time. I can’t even imagine what you and your wife are going through right now, but I would be just as pissed, sad, upset, confused as everything you described. My thought and prayers are with you.

  38. :( Well that is just shit. Thinking of you and your family. Hopefully my thoughts make it all the way around the world to you.

  39. I was forwarded your site through a friend. We had a similar experience. Our son was diagnosed prenatally with two life-threatening birth defects. He will turn 4 in November. He spent most of his first year in the ICU at Sick Kids and has had 5 surgeries. He is a marvel. Please contact me directly if you’d like to talk to a parent who has been there. I am not a prayer, but do send you lots of strength and compassion. Please feel free to check out Jonny’s website at http://www.purdy-flacks.com
    Diane

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