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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”.
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.