‘Does the baby look okay? Anxiety twisted knots inside me. Nobody quite saw the almond eyes, sweet smushed nose. Then, I said what we’d been internalizing all along.’ Mom diagnoses her own baby after doctors fail to see signs

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Experiencing Miscarriage

“This is a story of love, faith and the proof that miracles really do exist. To tell this story, I need to rewind and tell a different miracle story from a different time. This story is about a couple in love and ready to start a family. However, like many families, they were unable to do so. They tried for 4 years, were tested and prodded and even put themselves on the adoption list. This story takes place in the early 70s, so there was no In Vitro – there was only prayer. Well, luckily for this couple, prayer was all they needed.

As the story goes, there was a statue of Mary that traveled from church to church around the world. If you were lucky enough to have the Virgin Mother come to your church, you were supposed to write down a wish and place it under the statue. This couple wished for a child. Nearly 3 weeks later, the woman found out she was pregnant. Nine months later, on August 3rd, the baby did not come. Twelve days late and on the Assumption of Mary, August 15th, this child did decide to make her arrival… and that child, was me.

Close up of newborn sleeping in white dress and white hat
Courtesy of Beth Craver

I tell the story of my birth because the Virgin Mother also played an important role in my son Judah’s life as did prayer and faith. Now, I’m going to fast forward to 2013. My husband Bobby and I were anxious to give our little 1-year-old a sibling. We didn’t get the chance to be too anxious though, because I became pregnant fairly quickly.

On my 39th birthday, we decided to share our news. Our son Calvin wore a t-shirt boasting, ‘Big brother. March 2014.’ We had him wear it to my birthday dinner with our parents, we sent the picture to all of our loved ones, and we carelessly shared our whimsical announcement. The next day we went to the doctor as a family. We received news that shook my world like it registered on the Richter scale. There was no baby on the ultrasound anymore. There was no heartbeat. As quickly as we became the excited, expecting, family; it was taken away.

I had the toughest time. I thought about the baby we would’ve had often. Something as simple as getting myself a cup of decaf sent me into a tailspin. I’d think, ‘I don’t need to drink decaf anymore,’ and then become inconsolable. I cried a lot. The weird thing is I didn’t think I would be this puddle. I knew people who had miscarriages. I doled out phrases like: ‘There must have been something wrong with the baby, so it is for the better’ and ‘God always has a plan.’ I was genuinely sympathetic but never quite understood the enormity of it all. I was of the opinion that you moved on, you had another baby and there was no reason for extensive tears.

Well, I cried and I cried and I cried. I cried for Calvin’s brother or sister, for the weeks spent caring for my unborn child, for the embarrassment of the birth announcement boast, for all the mommies in the world that had ever experienced this hurt. I cried for the callousness of comments I made to those I knew who suffered and for the casual way I was told my baby was gone. I cried for my pain and I never knew how I would ever come back from it. I also hated myself for being this way. Clearly, I was becoming a liability to those I loved. They carefully consoled me and took care not to mention anything ‘baby.’

Little boy sitting on couch wearing t-shirt that says, "I'm gonna be a big brother"
Courtesy of Beth Craver

Getting Pregnant Again

Then… I decided to move on. I do this often with pain. I just can’t stand my own sad, moping, pity-party anymore and so I climb out of the well… one slow rung at a time. It was a tough trek but everyone around me played their part.  My mom gave me a statue of the Virgin Mary with an accompanying prayer. She also gave me a Novena to say to St. Anthony. It seems my mom literalized the phrase ‘she needs all the prayers she can get.’ So, I prayed. I prayed every day. I prayed for joy and to become pregnant again. The last day of my Novena to St. Anthony just happened to be March 31st. This was the same divine day I would be able to conceive and the same day that the baby we lost would have been born. I was in such disbelief.  These three incidents lined up like Orion’s belt and so I had to Google St. Anthony. I needed to know more about this Saint and discover why he was leading me to miracles. The first line I read said: ‘St. Anthony was born in Portugal in 1195; on 15th August’… and THAT is when I knew I was pregnant.

Ultrasound of baby
Courtesy of Beth Craver

This time in our life was not an easy one financially. I was again displaced in the city district and substitute teaching. Bobby was trying his hand at entrepreneurship and we were on Obama Care. I had to leave the only OB-GYN I had ever known and search for another. I found a decent joint, albeit not close to what I was used to. The sudden change was a sucker punch. The doctor was a kind man and empathetic to my previous situation. He put me on progesterone and watched me carefully. He ensured that I would not endure further heartache.

The time came when that window opened; the small window where genetic testing was at its optimum moment. The nurse asked me if I wanted it done. With Calvin there was no question. It was automatic, and I waited for the results as if my breathing depended on it. When the results came in the form of a yellow postcard, I literally kissed the paper and thanked the Lord above. So, why now the hesitation? I talked it over with Bobby, with countless friends, with family. Slowly, as I debated… money being the most obvious of obstacles, my window was closing. Obama Care did not cover this testing and the cost to us would be near one-thousand dollars. I went back and forth if this was indeed a small price to pay for peace of mind. In the end, through weeks of procrastination, through moments of pros and cons, the window was shut and locked for me, as I convinced myself it wouldn’t have changed anything anyway.

As the pregnancy progressed, we decided we really wanted to know if this baby was a boy or a girl. I felt so different that I was convinced it was a girl. The day we had the ultrasound done, the technician was put in the interrogation room. I shined that light directly in her eyes and demanded things like, ‘Does the baby look okay?’ ‘Is everything normal?’ My fear of Down syndrome had not subsided and anxiety twisted knots inside me. It seems my interrogation tactics were not as scary as I thought. The only response I was gifted was, ‘Only the doctor can really tell. You’ll discuss it at your next appointment…’ and she definitely could tell the sex. She handed me my secret in an envelope and sent us on our way. The way she said it made me think I was having a boy and what she didn’t say kept my fears alive.

Husband stands in yard with arm around pregnant wife with hammock in background
Courtesy of Beth Craver

Worrying About My Unborn Child

Weeks passed as we celebrated the gender reveal. I tried not to cry as I learned I was having another boy. I gave myself the popular pep talk that it would be easier and girls were a pain like I was. I even tried, ‘hey, it will be cheaper because you already have boy clothes.’ I’m pretty good at talking myself down from a ledge and I almost had myself sold. Things were okay. I had a job, I looked pregnant instead of that ‘I just downed 6 beers and some hot dogs’ look. I was even heading back to my old doctor. I took the stand, pleaded my case and won! They were going to take me back. The downside was that I never DID get that ultrasound analyzed. It lurked in the back of my mind, but it found sneaky hiding spots to stay in.

Ultrasound of baby with blue and white polka dot bow photoshopped over it
Courtesy of Beth Craver

So, there was the day. I was reunited with my old doctor and it was like we didn’t miss a beat. We got right back into our old flow where I did all the talking and he smiled gently telling me all was fine. Then, I said it. ‘Doc, I’m really worried about Down syndrome. Do you see anything in the ultrasound from my other doctor that would suggest it?’ I was met by an eager no and an inspection after. He said he didn’t see a thing but suggested I get another ultrasound just to be sure.  As I trotted to the scheduling desk, we went back and forth trying to secure a date. That’s when the ultrasound tech walked by. Perfect. She was available right then.

I walked in and we watched my baby, in 4D no less, moving and we celebrated him being cute. We giggled at him, she confirmed he was most certainly a boy (cue little stomach drop again) and then… ‘did you have the genetic testing done?’ I went into full blown panic mode. My cheeks got hot, mouth dry and how did all of the sudden my tongue get too big for my mouth? I said no. I asked if she saw something. She replied, ‘not outwardly’… well, that’s a crappy answer.

She asked me a series of questions, one being how old I was and something about how I would never do anything about it anyway so what does it even matter. Then, there was a lot of stumbling and stuttering on her part, in response to my terror, I’m sure. Eventually she shared, ‘I only asked because you are older.’ Wait WHAT? She had JUST asked me how old I was. Sirens were spinning in my head. This is it, I thought, he has ‘it.’ I was so mad. How could she ruin my perfectly orchestrated ignorance? How could she assume I wouldn’t do anything about it and then be so careless?

3D ultrasound of woman's baby
Courtesy of Beth Craver

Searching For Answers

What ensued next can only be described as pure coo-coo for Coco Puffs. I looked at every Down syndrome website ever known to man. I spent four hours googling and asking questions on message boards. I showed my ultrasound to a complete stranger so that she could analyze it. I ignored my tangible world to analyze and re-anaylze what was happening in my brain. I frantically searched the screen in front of me for signs. I was tired. Women with babies that have Down Syndrome are tired. Check, he has it. No history in my family, phew he doesn’t have it. Ears are set low, he must have it. The doctors would have noticed by now, ok he doesn’t have it… and so this went for hours and hours until I was being strangled with information. Poor Bobby was so concerned with my behavior that he immediately called the doctor when he came home. He tried to stop the madness. The nurse assured him that if something was wrong the doctor would have let me know.

I had a million excuses why the doctor couldn’t make the call and so again, I turned to prayer. I was going to revisit my Novena and pray to my girl Mary. Bobby agreed I should revisit my old prayers and to him, I revealed a revelation. I told him… prayers only work if what you ask for is good and true. I told him that praying for your son to NOT have Down syndrome didn’t seem good and true to me. Bobby suggested I pray that our son was healthy instead. Well, that sounded rational (as Bobby often is)…and so I did. I prayed with all my heart, every minute I could, with prayer hands clenched tight as to will it to come true. I prayed for a healthy son and for worry to leave my mind.  This went on and on for the rest of my nine months. I brought my mom as a shield to my next appointment and I asked the doctor if he saw the signs I now knew so well. Again, my fears were denounced by the doctor and my mother urged me to let the obsession cease. Outwardly I did, and inwardly I suffered with prayer as my chaperone.

Husband sits with son and pregnant wife in large Adirondack chair that says "We heart Lake George"
Courtesy of Beth Craver

We toyed with different names for our baby boy, Judah always being in the running. When I went to church, ‘Judah’ was the place named in the very first reading. A sign! Then, I called on my new best friend, google, and found the name meant ‘praised by God.’ That was it. The name had to be Judah. If prayers and Saints and Virgin Mother’s couldn’t protect him then his name would. It was the best and the only thing we had control over and so hell yeah we were going to go there. The name was decided.

I will spare the medical jargon of how I ended up in the hospital and save you from the yawns.  A month or so before I was to deliver; I just felt like I couldn’t. I couldn’t climb another stair, cook another meal, sleep another night. It was a different tired than with Calvin but then again everything was peculiar. I left work for some well needed rest and to enjoy my Thanksgiving break. The day before Thanksgiving, I headed to the doctors for a routine movement check that went awry.  He wasn’t moving enough. His heart beat was weak. Then, on his ultrasound and pumped full of sugary juice, we couldn’t get his groove on. So, one trip to the hospital later, I was sent home and asked to come back Saturday for another movement check. The request was almost made to sound insignificant.

My appointment was at 9:00 a.m. on Saturday and the debate of whether to shower or not was longer than it needed to be. Eventually, Bobby and I came to the conclusion that showering was unnecessary as we were headed to my niece’s party that afternoon. Obviously, it would be best to be fresh and clean for such a soiree. Again, the baby was not moving enough, again I had sugary goodness, again the ultrasound did not indicate wiggles and again I asked if ‘everything looked alright.’ I hoped the sweet, blonde tech knew this was code for ‘does my baby have Down Syndrome?’ Her, ‘No, he’s fine,’ was the most astounding I had heard. Yay. The prayers were working. I was sent back upstairs and the doctor declared I would be staying. We would be getting that baby out of there to be on the safe side. So, just like that… shower-less, without the magic potions to keep a girl looking pretty, and without as much as a hug, kiss or bye-bye to my first born, I was admitted. Our life was about to change as we knew it. Not in the way like, you have another child, or your hair is now platinum. But more like, if I saw old me on the street, I would not even recognize her careless ways anymore.

Giving Birth

Okay, so here’s where words like Pitocin and epidural come into play. Words like blah, blah hours of labor and pushing and nurses and everything labor. These are all, sadly, sidebars. These precious moments, the ones that are scattered on mommy blogs, the ones that put Times New Roman to blank word documents, the ones that new moms cry tears of joy about; these are not the noteworthy of documentation to the new me.  Oh, they were ‘the talk’ when Cal was born, but with Judah they are just motions. I still don’t know if that makes me happy, makes me sad, or just makes me. I am proud of one defining moment. I called a kind, generous, nurse friend of mine the moment that the time was near. She rushed to be by my side and smiled with gentle, reassuring eyes.  The whole time I labored her presence was a true gift. When my baby’s heart-rate dropped, a blur of frantic scrubs rushed into our room. I searched for her heavenly face and I cried. Nerves and tiredness overtook me. My friend and my Bobby reassured me as I feared my baby might not make it.

At this one moment, I felt: genuine, unconditional, I don’t care WHAT you have, kind of love. When they asked me what was wrong, I uttered through embarrassing sobs… ‘I just want him to be okay.’ They smiled guaranteed grins and then, he was. Shortly after, he was sent to me. There was laughing and heartwarming glances. His warm, teeny, wrinkled, loveliness was placed on my chest. I stared deep into my friend’s eyes, begging, ‘is he okay?’ She replied with the warmest, truest, ‘YES.’ All I could speak was, ‘I can’t see his face.’ Bobby reluctantly showed me. He knew what I yet didn’t. No one did. No one believed us. I recounted my fears to my friend later. I remember her sympathetic response well. ‘No wonder why you asked me that, you had a panicked look on your face.’ The doctors, the nurses and specialists all needed convincing. Nobody quite saw those almond eyes and sweet smushed nose like we did. I said it. I said what I had been internalizing all along. I irrupted to the room and I hazily spoke: ‘We think he has Down Syndrome.’

Mother lays in hospital bed holding newborn she thinks has down syndrome while husband kisses her forehead
Courtesy of Beth Craver
Mother looks to the side smiling as newborn she thinks has down syndrome lays on her chest
Courtesy of Beth Craver
Nurses hold up newborn baby whose mother thinks has down syndrome
Courtesy of Beth Craver

Down Syndrom Diagnosis

Judah was thoroughly inspected. Professionals waivered. ‘We see what you see, but we don’t.’ Blood tests were ordered and curious glances were given, but Bobby and I knew. I purged my knowledge immediately. We told our family and friends. I withheld happiness. I suffered. Sadly, baby Judah waited. Miracle Judah who was brought to us all through prayer and love and desperation… had to wait. He lay peacefully and perfectly content in his luminous bassinet as we agonized. We inspected, absorbed, and embodied all that we knew what was but couldn’t believe that would be. We were handed a giant package of information but told not to look at until we knew for sure. The diagnosis was the butterfly that could not yet be captured.

Close up of newborn's face whose mother thinks she has down syndrome
Courtesy of Beth Craver
Newborn baby whose mother thinks has down syndrome lays asleep with blue hat on and swaddled in blanket
Courtesy of Beth Craver

Shame drips off my being as I recount the next portion of our experience. I still squeeze Judah so tight that I hope I squeeze the memory right out of him when I think about it. We sobbed. We stared. I uttered that this was not what I wanted, and I thought so much worse. I slept in minutes and couldn’t eat. My moments of slumber were filled with nightmares of me spitting out glass. I googled this in my insomnia to find that it meant insurmountable grief. Ahh, well, that at least made sense. Calvin came to visit with smiling eyes and a ‘big brother’ shirt. He was perfect at taking in the joy of Judah and I longed for him to be my only child again. As Calvin’s proud, happy, big brother face was grinning, a doctor declared with a careless nod to answer our uncertainty. The pediatrician’s response made me need a sweater. Our parents shifted uncomfortably at our pain. Calvin’s love never wavered.

Young boy stands touching newborn sister whose mother thinks has down syndrome
Courtesy of Beth Craver
Close up of newborn whose mother thinks has down syndrome sleeping on her back
Courtesy of Beth Craver

What seems like years later, Judah and I were wheeled out of the room of despair and into real life. The hospital wore Christmas decorations crisply and people smiled at me with such goodwill I could touch it. I glared inwardly ‘you don’t know’ with a holiday, new baby grin, plastered on my face.

Newborn with down syndrome sleeps in carseat with blue hat on covered in blue and white blankets
Courtesy of Beth Craver

This story does not have a sad ending. It has everything but. Friends, family, kisses, casseroles, gifts, and God prevailed. Every single person rose to the occasion. Warmness fell like glitter on our family as we fell in love. Our Holy baby was bigger than us. As we looked at the grand picture, we knew Judah was the phenomenon he was supposed to be. The glory followed the grief and this perspective couldn’t have been found without comparison. So, please do not read this and feel bad for us or for our pain. We needed it to be where we are. Do not feel that you need to offer us ‘sorry’s,’ although, we know the good place they are coming from. Just know this… Our tale is one where Judah was able to put us in a unique space. He taught us how to relish joy and how to see it everywhere. I mean everywhere!

Woman smiles as she looks down at newborn with down syndrome asleep in her arms
Courtesy of Beth Craver

As a side note: 50% of babies with Down Syndrome have heart problems. Others have hearing, eyesight, thyroid or digestive issues. At this point, Judah has none of these. It looks like Bobby was right all along.  Judah’s health was really the only prayer to be answered… and what is good and true… well, I cradle that in my arms every day.”

Close up of baby with down syndrome's face
Courtesy of Beth Craver
Mother sits in outdoor wicker chair as she kisses baby son's cheek who has down syndrome
Courtesy of Beth Craver

This story was submitted to Love What Matters by Beth Craver of New York. Do you have a similar experience? We’d like to hear your journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.

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