All Out of Miracles

It was going to be a comeback story for the ages.

Seriously. Even though we had seen ultrasound after ultrasound of the baby’s legs together and not moving, this time was going to be different. MJ warned me not to be optimistic because she didn’t want to see me crushed. But her resignation and morbid acceptance of this baby’s fate was only going to make this tale of redemption that much sweeter for me. After all, we weren’t in Cape Cod anymore. This was a big city Boston hospital. The flip side of the expensive real estate and high cost of living in New England was about to pay off in the form of being 50 miles away from the best hospitals in the entire world.

I tweeted optimistically on the train ride into Boston. As we walked down the long corridor at Brigham & Women’s Hospital I visualized what it would be like in just a few minutes when MJ and I would dance triumphantly out the door.  Doctors would applaud, nurses would cry and the rest of the patients would throw flowers at us. After all, Hemingway says “man is not meant for defeat.” And neither was I.

But things didn’t work out that way.

This ultrasound looked the same as the last. The nurse wouldn’t make any definitive statements, but concurred that the legs weren’t separated. Also, there appeared to be “other concerns,” but she wanted to leave those for the doctor. MJ was a rock. She was ready for the  news. She spent the last week steeling herself. But I’m a fucking idiot. Even with all the proof in the world slapping me in the face, I STILL held out hope the doctor would see something positive no one else had seen.

But he didn’t.

I don’t have super powers. Far from it actually. But during that final ultrasound I was desperate. I seriously focused on willing that kid’s legs to separate with my mind. There was one moment where the baby was absolutely still and the doctor got a close up of the legs. He held it there for what seemed like an eternity. My knuckles went white as I begged and pleaded in my mind for something. Any movement. Just some hope. Please kid, move those legs.

But he didn’t.

In fact, we learned things are way worse than we anticipated. The baby has Sirenomelia, otherwise known as Mermaid Syndrome. It is an EXTREMELY rare congenital deformity in which the legs are fused together. That is bad enough, but the doctor told us the baby has no kidneys. And no bladder. All due to some vascular abnormality during the third or fourth week.

That makes this a terminal disease and the baby’s health is already fading. There is zero chance of bringing this baby to term and obviously there is no quality of life to expect. In short, Pandora left the box open too long and hope flew the fuck out.

I am devastated. Thankfully MJ has the uncanny (and slightly unnerving) ability to process things at warp speed. She really is on her way past this. But I’m a dweller. A ponderer. And unfortunately we’ve been down this road before. We miscarried twice before Will was born, but earlier in the pregnancy. Now please know I’m not trivializing anyone’s losses. Miscarriage is terrible at any point. But for me, it’s so much worse this time.

I saw this kid’s hands. The complexities of the spine. The beating heart. This baby wasn’t just an amorphous blob or a speck on a grainy black and white ultrasound picture. It was formed with a head, a body, legs, femurs. We’re just about at 15 weeks and this is a goddamn little person who is dying inside my wife. And a piece of me has died with him/her.

I tried so hard to be strong for MJ, but I failed miserably.

After our ultrasound we had to see a genetic counselor. We were sitting in the waiting room when a man, woman and their 9-month-old baby sat down next to us. My heart went into my throat. The baby was so cute. She was like a little pudgy angel. But I took one look at her and my whole world shattered. In that moment she represented my unborn child and everything I was going to miss out on. I felt a panic rising inside me but the harder I tried to avert her gaze, the more intently she stared at me. I pulled out my phone and tried to concentrate on something else as the tears began to fall, and I couldn’t have been happier to hear our name called.

When we left the hospital, MJ wanted lunch. I did not feel up to it, but I wanted to be strong for her. We ended up going to the Cheesecake Factory and I told myself to just get through the meal and maintain some level of normalcy.

But I couldn’t.

I nearly lost my mind when they sat us next to a pregnant woman. I couldn’t make this up if I tried. From there it just got progressively worse. The walls started closing in and everything just started hitting me all at once. By the time we got our food I couldn’t stop shifting and fidgeting around in my seat. Thankfully my wife knows me inside and out and asked for the check while simultaneously sending me outside mid-entree. I barely made it out in the parking lot before I deposited my lunch on the concrete.

And from there I went to anger. Deep reservoirs of unadulterated fucking hate.

You have to realize, Sirenomelia is so rare. I mean c’mon. There’s a 1 in 100,000 chance of having a kid with this syndrome. And I’m the one?? Are you kidding? It’s like the bizarro version of winning the goddamn lottery. After two miscarriages now we’re hit with a 1 in 100,000 trifecta. It’s mind-bogglingly fucked up. And I hate it.

I hate that Will is still kissing MJ’s belly and asking for a sibling. I hate that MJ nurtured this baby and felt it grow inside of her for almost four months only to lose it due to a glitch in Mother Nature’s plan. And I hate the notion of unfulfilled potential, because I can’t think of too much that’s sadder than that.

But most of all, I hate that it hasn’t fully sunk in for me. Even as I write these words, it doesn’t seem quite real. I know I’m still harboring some hope, but I need to get that shit out of my system because in the next week I’m going to have to take care of MJ post-surgery and Will simultaneously. I’m just not ready to say my goodbyes. But goodbye is coming and coming quick.

Thank you all for your support, thoughts and prayers over the last two weeks. I just wish I had better news to share.

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51 thoughts on “All Out of Miracles

  1. Shit, Fuck, Shit.

    The same odds we had. We hit them too. Fuck. I am so sorry. I am sorry your baby can’t live, I’m sorry you have to deal with this, feel this and live this. I am sorry for your baby, for your son, for your wife and your family. I’m sorry for you. So, so, so sorry.

    Love to you all

  2. Oh Aaron and MJ. I looked up this whan you first mentioned it, and all I can do is cover you with love. The fact that you love this baby so much that you dont want it to suffer for hours or days says so much about how you love your kids.

    No human being should go through that. You love your child. Period. I looked it up and know the details, and you are making the best choice. Fuck those that say a miracle can happen, 3 in 100,000 and they all died horrible deaths. With much love, I hope that your next child is as healthy as Will. I have been in tears all day witnessing the pain. Stay strong, you are young. Love all around.

  3. Hey, I’m sorry for what your going through. We lost our first at 22 weeks. My wife had to give birth and everything. She was fine the whole time and then all the sudden she didn’t feel well. She went to the Doc and they sent her to the hospital immediately to see the perinatologist. They said my wife’s cervix had opened and the water sac was coming through. They put her upside down for the night to see if that would work. It didn’t so they told us there was on procedure left that they could try where they drained the fluid from the sac and pushed it back up. The procedure didn’t work. Zack would have been eight years old now.
    I never cried so hard. I actually got cramps in my rib cage. I doubt any of this helps but know my thoughts and prayers are with you.

  4. I am so sorry for your family. Trying to remain strong is difficult, so don’t beat yourself up when you falter a little. You have done everything possible to care for your wife and Will, and I know you will continue to do what is necessary. Make sure to give yourself the time to grieve. Losing a child is never easy, no matter what the age or reason. I wish I could do more than just say, once again, I’m sorry.

  5. As the parent of a child with a rare disease I can totally sympathize with your grief & your wife’s resolve. When something like this happens it hits you hard. I am so sorry that you are losing your baby.

  6. My heart is breaking for you, I’m SO incredibly sorry. I know there is nothing I can say that will really help but know that I’m thinking of you. xoxo

  7. Dear Lord; I am so sorry to hear this. Jason and I were really pulling for that miracle for you guys. I pray you find the strength to endure this pain and to focus on the blessings you do have — a wonderful, strong and beautiful wife; a healthy, happy and beautiful son — to help you process your grief. (And I’m sorry that nothing I can say has the power to make you feel better; I wish it did.)

  8. I am so sorry. I don’t know if anything helps, but the one thing that ever made any sort of sense to me in situations such as this was the Buddhist belief about stillborn children: beings that had reached such a state of divinity that they only had to be on earth for the tiniest moment before they could attain Nirvana. Touchy feely bullshit perhaps, but I feel like that belief gave even the shortest life purpose. Peace to you all.

  9. I am so sorry that you all are going through this, but I truly believe that the baby in the waiting room and the pregnant woman were all signs of what’s to come in your future. God never hands us more than we can handle. Stay strong and positive. Hugs.

  10. I agree with BBC parent but I know you won’t find silver linings as you all heal and grieve quite yet. I’m kind of far away but if you need a meal or two I could leave it on your doorstep whenever you needed as to leave you in privacy but to help out after MJ’s surgery. I’m sure you have a lot of support through this though. Just know there are a lot of us.

  11. So, so sorry. My love to all of you. I know you are trying hard to stay strong for MJ, but if there’s one thing I know about her it’s that she’s stronger than anyone. She’ll make it through her own way and you will too. Take care of yourself.

  12. I am so sorry that this is happening to you and your family. I know that there really isn’t anything anyone can say to make this ok, so again I will just say sorry. You and your family will be able to pull through this and come out strong. Please don’t let anything that anyone says (I am thinking about certain people you might encounter when MJ goes for her procedure) discourage you even more than you already are. All my thoughts are with you.

  13. I am so so sorry. I wish this didn’t happen to you guys. Hang in there, and grieve any way you know how.

  14. Hi Aaron, I know we haven’t talked in a long time but Liz forwarded this to me. I am so very sorry for you and your family. No one deserves to go through something like this. Just know your tiny baby will never feel pain and never know how tough life can be. You, MJ and Will seem to have a great bond and that will get you through this. I hope for the best for you and your family.

  15. Yeah there is nothing anyone could say that would make a shit bit of difference so I have nothing more to say than your a wonderful writer and this story really conveys the human emotion of disappointment and hope unending. Wishing you all the best in the future.

  16. You don’t need advice today, you just need support. And that’s all I’m going to offer. It’s a devastating situation, it sucks, and it’s heartbreaking. It’s not fair. But you have an amazingly strong wife, the best little boy in the world, in-laws who love and support you, and parents who would change the world for you if they could and love you more than anything. That’s not going to ease your pain or save that baby we all love already, but it will help you through the darker days – at least a little.

    And you have friends – great friends. And for that, your Mom and I are eternally grateful – especially to them.

  17. All I can do is express my deepest condolences to you and your family. I’m so sorry. I hope you can come to find some peace with time.

  18. i’m not sure if this will make sense, but i offer it up hoping it will:

    i’ve always believed that there are some things we can never possibly get over, but i also believe that nothing exists which we can’t get through.

    may you find the perfect path of healing to help you do just that.

  19. I am so very saddened by this news. I am deeply sorry for you and your family. My thoughts and prayers are with you.

  20. Aaron, I followed your posts on the Dec 2010 BBC board not even knowing that we are both on the Cape. I am so sorry to read this latest installment of sadness. You and your family are in my thoughts.

  21. I have been gone and had no idea this was happening. I am so sorry. There are no words that I can say. My thoughts and prayers are certainly with you and all of your family.

  22. There are no words, but I wish there were to express how awful I feel for you and your family. It takes a lot of courage and strength to experience something like this and then be able to share your feelings with others. Feeling sorrow for you and hoping for a safe recovery for you wife.

  23. I lost my sister to toxic shock syndrome (I was 12, she was 15) about those same statistics, very very rare. Statistics mean poo when it happens to your loved ones. Jennifer Rothschild explained to her older child that some children are born here on earth, and others are born straight into heaven. Time on earth is short, and even our loved ones who don’t seem to be with us near long enough bring gifts to our lives that we can receive if we open our hearts. By sharing your unborn child’s story, I have also been touched by those gifts. God Bless you and your family during this time, may you find peace.

  24. I am so sorry for what you are going through. I know my words won’t help. I had 3 miscarriages – at 12 wks, 6 wks & 17 wks. They all hurt but I understand what you said about losing during the 2nd trimester…it’s hard. My thoughts are with you and your family.

  25. Your story was sent to me by a friend because we went through something similar. At 21 weeks we had the happy, “find out the gender” ultrasound only to find out our baby girl had a water-filled cyst where a lot of her brain should be. No one knew why, they’d never seen it before. Many ultrasounds and an MRI later, with each test the results became clearer and more dire, terminal, just worse. We had to induce and I had to deliver at 23 weeks and go home with no baby.

    I think of her every day.

    No one can know how that feels unless they’ve been through it and unfortunately there are many of us who have. I don’t know if that helps at all. It never helped me but I always hoped I could help others.

    The only thing I can be thankful for is not having to carry her to term and deliver a full sized baby girl and have her die then. Which would have killed me.

  26. No words can make you feel any better, but so sorry. Thoughts and prayers to you guys now.

  27. Fuck.

    Wish I had something better to say, but what is there? I’m so very sad and angry for all of you, and there’s just no way around how terrible this is. I’m so sorry.

  28. I’ve had several miscarriages in my past, and recently gave up a child due to circumstances beyond my control. My heart hurts for you.

  29. i am so sorry…….i pray for your family to find some comfort….somewhere…somehow.

  30. I am so sorry Aaron and MJ, I so feel you, but be strong. Coincidentally am also called MJ. Take good care of Will. God loves you and I love you too.

  31. My heart goes out to you Aaron and MJ, @Aaron kudos for standing up to those pro-lifers who don’t know what they are doing. God will help you through this and I’ll pray for you guys.

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