Looking Back

Most of you have heard about Maddie Spohr by now. I went back and forth yesterday, whether I was going to post about it, scared to feel exploitative of a really tender situation. But seeing as Declan was a 32 week preemie, I felt like I really had to. Just had to.

Declan was born on a Friday the 13th due to a placental abruption. We almost lost him. He stayed in the NICU for 6 weeks. During that time, he experienced many bouts of apnea and bradycardia – one night was so bad that I gave him mouth to mouth while alarms screamed around my head.

The first year was also hard. Bryan stayed home with Declan, but was a prisoner in his own house. Declan was especially susceptible to RSV, had to have shots to ward off RSV every month, shots that cost $1,000 a pop, shots that did get paid for by insurance – thank god – but all this fear of RSV made it impossible to live a normal life that winter. The first time Declan ever went to the grocery store was May 2003, when he was 9 months old.

He also had mild Retinopathy of Prematurity. We were lucky, he grew out of it at about 6 months, while most preemies with ROP need glasses or laser surgery. But I will never forget the tests, the poking, the prodding. Even after performing CPR with my own infant, I had to leave the Clockwork-Orange metal eye-positioner clamps to Bryan and the doctors. I sat on the other side of the room and hyperventilated.

As Declan grew, they watched. And checked. And we were lucky. He started to catch up and pass ahead his adjusted age for verbal skills. For the physical side, he stayed right on adjusted till around age 2, always lagging a bit in gross motor, never qualifying for services – but who really knows if that was prematurity or just my clumsy genes? Lucky. By age 3, you would never have known Declan had been born premature.

Now, at age 6, I barely even think about it anymore.

Heather will never be so lucky.

I can’t imagine the pain of losing a child. I know what it feels like to *almost* lose one. One that I never really knew, one that I never held, never laughed with, never read a book with, never watched the Today Show with. If I had lost Declan that day, there would have been a lot to wonder about. But Heather knows what she will be missing.

That has to be the hardest thing on earth to face.


Please consider a donation in Maddie’s honor to the March of Dimes, so other parents don’t have to go through what the Spohrs are experiencing now.

This article has 22 comments

  1. dawn224

    oh sweetie.

  2. Janey

    what an amazing post.

    I was so sad when I heard about maddie.

  3. mothergoosemouse

    I hoped you would write about Declan. Thank you.

    Because as terribly sad as the rest of us feel, the stories from people like you who’ve had preemies, who’ve watched them struggle, really bring home the mission of March of Dimes and give us all a reason to get involved.

    Exploitative? Hardly.

  4. Lotta

    Wow – I never realized you had such a hard time with Declan. It’s funny how the grief for Maddie is bringing up all these near misses.

    I had an anxiety attack in the car wash today. I was remembering when I was stuck in the middle and Mack started having a grand mal seizure. I couldn’t go forward or backwards because I was stuck on the car wash track. God.

    I don’t even know how to offer comfort to that poor family. I hope they find some measure of peace at some point.

  5. samantha jo campen

    I had gone a few hours without crying. Not any more!Beautiful post. It’s hard re-living it isn’t it? And then thinking about what COULD have been? Million times worse.

  6. Burgh Baby

    I’m glad you wrote about Declan. It helps to remind us that the good that the March of Dimes does sometimes does work, and that we all need to do more to support them.

  7. J at www.jellyjules.com

    This whole thing is heartbreaking, whenever and wherever it happens. I was a preemie, and my Great Aunt overheard some nurses in the hallway saying that I wasn’t going to make it. I didn’t have nearly the complications of so many babies, but since I was born 43 years ago, most of today’s preemies wouldn’t have made it anyway. The technology just wasn’t there.

    Heartbreaking for the families involved. For the rest of us, yet another reason to hug our babies close.

  8. monstergirlee

    This was a good post, a tender post, and just right for whats happened with Maddie.
    So sad, my heart aches for them.

  9. Kelly O

    Oh Amy, I hear you. I haven’t wanted to say anything for fear of being exploitive, but I can’t stop crying for them all. So, so sad. For any of us who have come close to losing a little one, it feels especially relevant. So fucking unfair.

  10. Megan

    This hits very close to home, with our own scare with Charlie.
    It’s very hard to even think back on those times. Sometimes we see things and have to experience things no mother should have too. My heart goes out to all the mother’s who lose their children, or even come as close to it as we have.

  11. zipper

    Such sad news.

    I did not know that about Declan either.

  12. EatPlayLove

    Watching a friend’s son grow through the last 7 years has been amazing, knowing he was born at 28 weeks.

    Thanks for sharing, it’s one square in this big jumbled up quilt of healing. Truly.

  13. andrea

    thanks for sharing.

  14. Megan

    Yeah, I hadn’t cried over this in a few days. Now I am again.

  15. Anonymous

    wow. just wow. came over from your response on Twitter to Sarcastic Mom. I really wish you could lead the Colorado #maddie team.

  16. Sarcastic Mom (aka Lotus)

    I didn’t realize Declan had this struggle! So glad he made it past the harsher times.

    Thanks for letting me know.

  17. Stefanie

    totally gives me hope that Sadie will catch up. She’s pretty behind right now (and for weight – waaay behind) but I see progress every day and thank god for that. This was such a lovely post! thank you!

  18. Christina

    I never realized just how scary Declan’s birth was.

    Reading your story really touched me, because as I read each sentence, it seemed more and more familiar.

    I had a sister, born in 1975. My mother had a placental abruption at 31 weeks (almost 32 weeks), but at that time, research into premature survival wasn’t what it is today. She lived for several days, also having bouts of apnea and bradycardia, until her little body couldn’t hold out any more and she died from a cerebral hemorrhage.

    I’m so thankful for the March of Dimes and all they’ve done to make sure children like Declan & Maddie & so many other preemies have a better chance at life, despite the rough start.

  19. Aimee Greeblemonkey

    thanks to you all for your words of comfort, empathy and sympathy.

    Christina, I am so sorry to hear about your mother’s story. Most people have no idea how scary placental abruptions can be, I am sad your family really does know.

  20. Christy

    I had the same back and forth with myself about writing about Maddie; especially because I only knew Mike and Heather through their blogs and a couple of emails back and forth last year. But in the end, I wanted them to know that they were all in my thoughts and prayers. The outpouring of love and support from the Internet has been incredible. It’s been a really beautiful thing and I hope they are able to feel it–even a little bit through their pain.

  21. allison

    amazing post for amazing group of kids.

  22. MoDLin

    Sometimes I ask myself why – why was I so lucky with my children and Heather and Mike lost Maddie? But I know there is no answer. As I hug our big and little ones closer and ache for the Sporhs, I am grateful for my blessings and so very, very sorry for their loss.

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