Her World Collapses

**To catch up on this Flashback Series, click the link at the top of the page**

Four days had passed in a blur of attempting to breastfeed, pumping, feeding her Baby Girl from the tiny little bottles, changing diapers, cleaning up spit up, trying to sleep even if only for a minute or two, giving a first bath and trying to remember when anyone, anyone on Earth, had told Her it would be this hard. She was so exhausted She couldn’t see straight and nothing was going like She thought it would. Clearly She was not cut out for this whole motherhood thing. After these four short days, it was time to take Baby Girl for a check up. The doctors had said they were concerned because she wasn’t eating well and wanted to weigh her. No big deal, She thought. We’ll take Baby Girl to her appointment and be home fairly quickly. That way She could get back to attempting this whole motherhood thing.

They arrived at the pediatrician’s office only to discover that the pediatrician had two offices and They were at the wrong one. The other one, They were told, where their pediatrician was that Saturday, was all the way across town. So off They went to the other location. So far They were not impressed with this office.

They checked in and waited. Their tiny little family of three. It felt so weird to be out and about as parents; to be out in the real world with all of Baby Girl’s stuff; to call her by her first name when they were checking her in even though they were still getting used to the way it rolled off their tongue. It was all so new and weird and great. They were parents and it was wonderful even though it was so difficult so far.

Baby Girl was called back to the examining room. She was weighed and measured and put through the normal newborn check up before they headed back to the room to meet with the pediatrician. What else was the doctor going to do? Just tell them if she had gained weight? That’s it, right?

Fairly quickly, the pediatrician walked in. The doctor didn’t look at them; she didn’t look at Baby Girl. The doctor had a piece of paper in her hand. She clearly remembered later that piece of paper. The doctor cleared her throat and said “I’ve got some bad news”.

What?

What?

All She could think of was mybaby’sgoingtodie mylittlegirlisdying babygirlisgoingtodie. She knew that those would be the next words out of the doctor’s mouth…your baby’s going to die. She knew it. She couldn’t breathe. She looked at Him and thought She herself was going to die.

The Doctor cleared her throat again and said “I’m sorry to tell you this but your daughter has Cri du Chat syndrome. It’s also called Cat Cry Syndrome. We suspected it from the sound of her cry.”

What? She didn’t even understand the words that were coming out of the doctor’s mouth. Was she speaking another language? What did syndrome mean? What? Why was she telling Them this when it couldn’t possibly be true? Her Baby Girl was perfect. Perfect. Perfect. They hadn’t said anything at the hospital about Baby Girl’s cry or that they “suspected” anything.

The Doctor then preceded to tell them about the syndrome. All She heard was delayed. Short life span. Sickness. Tiny. Eye folds. Mental Retardation. That word kept rotating over and over in Her head and She couldn’t get past it or make sense of it. Mental Retardation? As in retarded? As in not normal? As in not perfect? As in will live with us forever? And not go to regular school? And not get married or have babies?

Yes, 100% of kids with this syndrome have severe mental retardation. There is no spectrum. They are all severe.

Short life span? How short? Less than a year, typically, the doctor said. She couldn’t breathe. The room kept getting smaller and smaller and She was sure She would collapse any minute. The tears came and flowed freely.

All of the other details about the syndrome didn’t matter at this point. She heard the two biggies and couldn’t even wrap Her brain around them. Her Baby Girl was not going to live a year and if, by chance, she did, she had mental retardation.

He was not crying but was attempting to ask questions. But it was like being in a class that you were not supposed to be in and didn’t even know the subject matter…how could you possibly ask a question when you didn’t even know what you were talking about? When you couldn’t even pronounce the name even days later? When you’d never even heard of this syndrome? She just kept sobbing and sobbing and holding her Baby Girl.

The Doctor apologized again and handed them a piece of paper. It was a copy of a medical book from the 50’s about this syndrome. The doctor then left the room.

That was it? What on Earth were they supposed to do know? Who should they call? Why wasn’t anyone helping them navigate this new world they were just thrust into? This couldn’t possibly be IT could it? Just given a piece of paper and sent on their way?

They had to take Baby Girl to get her heel pricked again on their way out. They were completely silent except for Her sobs. They just held baby girl and walked close enough so that their shoulders touched. They made their way to the lab and the nurse saw Her crying and patted Her on the shoulder and said “It’s ok, hon, it only hurts for a minute. It’s much harder on the moms than it is on the babies.”

If only that’s all I was crying about, She wanted to scream. I’d give my entire being right now to be only worried about my baby’s pain during a heel prick. But She just kept Her mouth shut, attempted to smile at that nurse and kept on crying.

They somehow made their way back to their car. They were on complete autopilot and in a total haze. They drove home; they were both crying now. There were no words.

No words.

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18 responses to “Her World Collapses

  1. I remember when I first met you – not too long after all of this. I remember the determination you had found in such a short period of time. I remember your stories of the way you were treated – the way Olivia was treated. And today I shed another tear for you, Matt – for her.
    Thank you for allowing me to be a part of this journey with you. That amazing little girl that was supposed to die before she turned a year old and be so profoundly mentally retarded that she wouldn’t know who people are has touched so many lives in so many ways. I’m proud to say that she has touched mine:)
    Love you!!!

  2. WOW! I can’t beleive how blunt the ped was about all of this. That’s just crazy. I’m sorry you had such an awful experience with her diagnosis. I’ve heard many horror diagnosis stories in the Down syndrome world and yours is just as tough to read. Dr’s really need some sensitivity training in school for delivery bad news. Thanks for sharing all of this, I’m really enjoying reading this flashback series. Hug that gorgeous girl tight, she’s amazing!

  3. WHAT? That is how you found out? That is horrible, my heart is breaking for you guys. I cannot even imagine hearing something like that and then not getting any support. It just reinforces that even though I have never “officially” met you, I know that you are one of the strongest people I “know”.

    And obviously, Olivia is a miracle. But I’m sure you already knew that.

  4. You got a piece of paper? Was your bill for the office visit attached to it? Holy Shit – how callous and unsupporting for you and Matt at such a volatile time.

    Your perserverence is amazing.

  5. Oh. Man. This was just as direct, cold-hearted and DISTURBING as it was for me. That paper she had in her hand… was that the info she had printed off the internet? That’s what the NICU doctor had in his hand while he stood over me, one arm leaning on my son’s incubator, and giving me the news. When I asked him questions… he looked down on this paper searching for the answers. And, he eventually walked away. At that moment, I didn’t know what what worse: the diagnosis, or the way it was presented to me. It still makes me sick to this day.

    And to learn that I wasn’t alone? You mean other doctors behave that way? Use those words? That tone? WALK AWAY?

    Lucky for you, you have found a way to turn things around. Lucky for you, you have also been given strength to pull through. Lucky for Olivia, you and Matt are her parents. Just lucky.

  6. I hear the same with my baby Galileo, now Im doing the best for him, I just want that he be happy, I just have love love love for him. You know that my english is to bad. and Olivia is great and you are amaizing, my inspiration.

  7. You continue to amaze me, I’m so glad we are friends and our paths crossed

  8. So incredibly powerful. Thank you so much for sharing!

  9. Over the last year or so of getting to know you and your family through this blog, I’ve thought of you as someone who was positive, determined and full of love. Reading through this series, this week’s story especially, I realize you truly are nothing short of amazing. Thank you for sharing so much of YOU.

  10. It’s been said before, but I will say it again, “You are amazing and so is Olivia and so is your family!”

  11. I read this post yesterday and it stayed with me. I am so sorry you had to experience assembly line medicine. At a point when you are the most vulnerable, you need guidance from someone who is knowledgeable about the field. Leaving you to carve your own pathway seems unusually heartless. I am glad you could take your family’s love and determination to move past this encounter. Thanks for sharing such a personal post.

  12. I wish I could reach back in time and give you the hug and words of comfort and support you needed at that moment. In reality, you have been at this longer than I, and I look to up to you in so many ways. What hope and inspiration you give us! Thank you for all your posts.

  13. I am so glad that they were wrong and that beautiful Olivia is still with us and thriving.
    I hope that they do things differently now. I don’t know how you stayed so strong!

  14. Fortunately for us our pediatrician and midwife were very “pastoral” in their approach. They came to our apartment together to present their findings, told us that their suspicion was not definitive, asked if we had any questions, and assured us that Chiara was completely healthy and would most likely live a full life and as normal as one could live with Cri du Chat. They were very supportive and have been constantly available to us ever since.
    Our time in the hospital, however, was a completely different story, and much more akin to your story here. The doctors and nurses had no idea what they were dealing with, kept telling us that our little girl was going to be severely mentally retarded (seriously, they would wake my wife up at 3 and 4 in the morning on multiple nights just to tell her that), had no clue how long we could expect her to live, etc., etc., etc. Fortunately there was one upper-middle aged doctor who was completely honest with us. “We know how to pronounce it,” he admitted, “that’s pretty much it.” He and our pediatrician have been the only doctors that we’ve come into contact with that are willing to admit that they know absolutely nothing about Cri du Chat, and that dealing with Chiara is as much of a learning experience for them as it is for us.
    Still, with everything that’s happened Chiara is our little angel, as Olivia is for you. Whenever my wife and I talk about it we both agree that we wouldn’t change a thing about her. She IS perfect, not despite the syndrome, but because of it. She’s brought so much joy and happiness not only to us, but to everyone around her. I can tell that Olivia is the same. May they both continue to do so for decades to come!

    God bless you!

  15. Unbelievable. I cannot believe that is how a doctor would share information like that. Or that they just let you walk out of the office. Knowing that insecure feeling of being a first time mom, I can’t imagine being faced with this during that time. You are both so strong. Thank you for sharing your story!

  16. Wow. I just got all caught up. I hate doctors, okay not all of them but….. we were at least fortunate enough that they told us in the hospital that they suspected Ella had Ds and then were sent home to wait for the results. I cannot imagine how hard this all was. The only thing that kept me going was Hunter, if Ella was my first baby I don’t know what would have happened.
    I think you are incredibly strong and an amazing mom!!!

  17. There aren’t words Tiffany to describe the pit I feel in my stomach. No words.

  18. I have just discovered your blog and have been reading your flashbacks. I cannot begin to imagine how hard this was for you. My 19 month old daughter has Cri du Chat. She is our third child, though, and we have a wonderful pediatrician who has been nothing but helpful and supportive. It was still amazingly difficult for us to hear at her two month checkup that she might have a rare genetic disorder and that we should have some testing done.

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