Carpenter Syndrome – The Story of Wyatt Easton Dryden

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A mother holding her dying son at birth.

Today I have the honor of sharing a guest post from a fellow Mama that had to make the brutal choice to terminate for medical reasons. It’s the story of Wyatt Easton Dryden. He was diagnosed with Carpenter’s Syndrome.

The Story of Wyatt Easton Dryden- Carpenter Syndrome

My husband and I have been together for 9 years. Throughout each year family and friends would ask us “when are you going to have a baby?”, and “why are you waiting so long to get pregnant? You aren’t getting any younger!”. But, we had a plan, and we were sticking to it.

We waited until we were married. We waited until we were able to buy a house to have a stable home to raise a family in, with room to grow. We waited for my husbands business to take off. We waited until we felt we were financially secure. We waited until we were ready. Simple as that.

By October of 2017 we decided to start trying. For some strange reason we both had a feeling it would take us around a year to get pregnant, but it happened almost immediately!

By early December we found out we were pregnant and were completely over the moon. We could not have been more thrilled with this exciting news! We were going to be a family!

We waited until Christmas Day to surprise our families. The house was full of hugs and kisses and tears of joy.

Shortly after Christmas we got our first ultrasound photo of our little peanut and my heart melted. I was already so in love. We started reading books and downloaded all the apps to follow the weekly progress of how our baby was changing and growing. How fun to see the differences between each week!

At 13 weeks I went in for the routine NT scan. The ultrasound tech was bubbly and happy as I lay down and I was immediately comfortable. We had quite the little dancer in my belly – non-stop spinning and stretching. I had no idea they moved so much at only 13 weeks!

The tech spent almost an hour patiently waiting for our babe to hold still so he could get good measurements, but, appointments were stacking up behind me. He almost decided to call it and have me come back the following week, until the very last minute he was able to get exactly what was needed.

By this time, our bubbly tech was pretty quiet. The laughter and conversation ended fairly abruptly as he walked me out and told me our O.B. would be in touch with us as soon as they go over the results.

I immediately had a horrible gut feeling that something was wrong, but tried to play it off like it was all in my head and I was stressing for no reason.

A week or so later the doctor called to say that the fluid in the neck measured slightly thicker than average and as a precaution wanted to do some additional blood panels. I went in the same day to get the tests done.

Those results showed a negative result for the most common issues that can be seen early, like Trisomy 21, but, my blood work still came back abnormal and they weren’t sure why. We were told it could have been due to a heart abnormality.

At this stage we were under the impression it still wasn’t anything to be overly stressed about, so we decided not to have the Amniocentesis procedure done. I was too worried about that causing a miscarriage and I didn’t want to risk it.

The good thing about having the extra panels done was that we got to find out the sex early. We were having a baby boy!

My husband and I were both hoping for a boy, so we were grinning ear to ear when we found out, and naturally started planning our woodland themed nursery right away.

We agreed on a name immediately. Wyatt Easton Dryden.  It was perfect.

After the inconclusive results from the blood tests, we were sent to a maternal fetal medicine specialist a few cities over to have a follow up ultrasound and echo cardiogram.

We ended up seeing that doctor several times. Over time they discovered several abnormalities. Each visit was worse than the last.

  • The heart was tilted on it’s axis which made one half appear much larger than the other, along with issues with the bicuspid aortic valve not functioning properly.
  • The skull plates had begun to fuse together creating an abnormal head shape, called craniosynostosis.

At this point they decided we needed to start seeing a specialist at the health science hospital a couple hours away, as they had access to better equipment and more experienced doctors who have already dealt with similar cases. The new doctors closely monitored these abnormalities, and discovered more.

  • They showed us that Wyatt now had an extra toe on each foot and several of his fingers were fused together.
  • They were worried about the skull preventing the brain from forming properly, which can lead to mental disabilities, sight, and hearing problems.
  • He also measured almost a full pound bigger than average.

They strongly suggested we do an amnio to find out how all of these symptoms were related. We agreed.

It took over a month to get results from the amniocentesis. The longest month of my life.

I was at work when I finally received a call from the genetic counselor explaining they had test results. We decided to make the trip up to talk about it in person.

Carpenter Syndrome.

We had never heard of it before…and there is a good reason for that. There have only been 300 cases in the last 100 years. 3 cases a year. Across the whole world.

Newborn baby with carpenter syndrome lying next to a soft plush teddy bear

My husband and I are both carriers of this faulty gene, meaning we were unaffected, but can pass it on. They explained the odds of the two of us living in the same state, let alone finding each other and having this baby are literally one in a million. ONE IN A MILLION!

I couldn’t wrap my head around those odds. I still can’t. How?! Why did this happen?! What did we do to deserve this?

We did everything right. We waited until we were ready. We had everything in place to take care of this baby.

I made sure I was taking my daily vitamins and eating well. I stopped drinking by beloved caffeinated coffee and lunch meat.

I couldn’t understand what happened. I felt like I was being punished and didn’t know what for.

The truth of it is, we did nothing wrong. We just got crappy genes and there wasn’t anything we could do to prevent it.

With that diagnosis, all of Wyatt’s symptoms aligned and made sense. The heart defects, the craniosynostosis, the fused fingers and extra toes, the large body size. Except now, we also knew what his future would hold.

90% chance of mental disabilities, possible blindness, deafness, many cases with teeth not growing in or the roof of the mouth not forming, and all males need surgery to drop the testicles. And of course, living a very short life.

It was so much to take in. It would mean a childhood of heart surgery after heart surgery, to cranial and reconstructive facial surgeries. It would mean one of us would have to stay home to provide full time care. It would mean even if he was the 1% that lived to be 20 years, he would never be able to live on his own.

He would have a slim chance of making friends, being in a relationship, would never be able to drive, would never have any freedom.

It was the hardest discussion I have ever had in my life. In the end, we decided to save him from a life of suffering.

We decided to terminate, and it was NOT a decision we made lightly.

To be honest, saying those words out loud to the doctor shattered my heart. I felt like a terrible person. I had lost my baby before I ever really got to meet him, and I loved him so much. More than words can truly express.

As soon as the decision was made, a plan was in motion. I was 29 weeks along, so they couldn’t put it off any longer. Our doctors discussed with the ethics board to make sure everyone agreed. They came back only 30 minutes later with the all-clear.

We had a few hours before a room was available for us in labor and delivery so we ran home and packed an overnight bag. Once we were back, they took us to a quiet room where they injected Wyatt with medicine through much stomach to put him to sleep. They repeatedly assured me I was doing the right thing and he had felt no pain.

I couldn’t look at the monitor. I distinctly remember the exact moment I felt him stop moving. He was always such a wiggler. I can’t even describe that moment. I just felt so empty and so heavy, and I couldn’t catch my breath. I began to question everything.

What if he was the 1% that would have an almost normal life?

What if we got the best of the best to do his surgeries?

What if he had a chance and we took it away from him?

My husband squeezed my hand tighter to calm me down, and we were taken over to the labor and delivery wing where I was induced. It was a long, long process.

It was so surreal being in that hospital bed, in labor, and realizing I wasn’t going to be taking my baby boy home. I was in labor for 42 hours. I had always thought I had a high pain tolerance, but this was unlike anything I had ever experienced.

By the time I gave in and asked for an epidural, I thought I was going to pass out from the pain. We waited 20 minutes, with no results. The doctors came back to try again, and this time it was immediate relief.

I was finally able to get a couple hours of sleep after an exhausting few days, and by the time I woke up, the doctor came back in to check how dilated I was and told me it was time to start pushing. I pushed for 45 minutes, and there he was.

June 1st, 2018, we met our son Wyatt Easton. 4 lbs 9 oz of beauty.

Birth certificate of Wyatt Easton Dryden born June 1, 2018

The room was silent. No one speaking, no baby crying, just me wailing in pain from heartbreak.

The doctor stitched me up while the nurse cleaned Wyatt up and set him on my chest.

I wanted so badly to see him open his bright eyes and coo and be soothed by my heartbeat and voice. I held his hand. I kissed his face. I smelled his head. I told him how much we loved him. I didn’t want to let him go. I couldn’t let him go.

This couldn’t possibly be real life. And then came the harder questions that no one prepares you for. What to do with his body? It hadn’t even crossed my mind. I did not get that far.

Coming home with empty arms was equally as hard. Our house was taken over with all of Wyatt’s things.

The swing in the hallway, the ultrasound photos on the fridge, the nursing pillow next to the bed, all of his new clothes and toys, the decorations we hadn’t yet hung in the nursery. My husbands truck was stuffed with the car seat, stroller, and boxes of diapers.

Our baby shower was planned for that weekend, and then I had to ask my sister to contact everyone to tell them the party was canceled. I couldn’t face my friends. I didn’t want to see the tear filled eyes of my family members.

I just wanted to be alone. I didn’t know how to survive this pain.

I didn’t sleep. Ever. Even after full days of nonstop crying.

My brain was so foggy but I couldn’t turn all these thoughts and emotions off long enough to close my eyes. My body ached. My belly was empty. My breasts were engorged.

No one warns you about the emotional pain that comes with trying to stop your body from producing breast milk. It serves a purpose, and that purpose is gone.

I felt like I no longer had a reason to be here. I had major anxiety about leaving the house. I was so scared to run into someone we knew. So scared to see friends and family. I didn’t know how to talk about what I was going through, and neither did they.

 

Tiny baby feet of Wyatt Easton Dryden- a baby with carpenter syndrome

After 2 weeks I thought I needed to force myself out of the house and get back to work for some distraction and some sort of normalcy. It did not go well.

The only thing I could concentrate on was trying to keep it together for a few short hours. The first time a co-worker stopped me in the hallway to cheerfully tell me congratulations, I fell apart. I walked away without saying anything and hid in the bathroom to cry. How do you even respond to that?

I know some people want to be congratulated in these cases. I am not one of those people.

While I am incredibly grateful for getting to experience labor and that I was able to meet and hold my first child, I am far more angry about it. I am bitter. I am confused. I am devastated.

I feel guilty even though I know we made the right decision. I am not ok. And I will definitely never be the same person as I was before.

I want my son. I want to be a mom so badly, but am also completely terrified of trying again and ending up with the same results.

Occasionally, I will be having a perfectly fine day, and then out of no where I will have a flashback to that hospital bed and the silent room and everything falls apart. Or I see a baby in the grocery store, or kids outside playing ball with their dad and I think – that is supposed to be us.

I imagined Wyatt’s first birthday party and having my best friend bake his smash cake. I imagined his first steps and wondered what his first words would be. I imagined reading together in bed every night.

I imagined meeting his first real friends and sleep overs. I wondered if he would be artistic like him mom or into sports like his dad. I imagined his dad teaching him how to work on trucks, and me teaching him how to respect girls.

I thought about what he would be like as an adult out on his own.

Now, I still think about all those things, but instead of smiling and laughing about it, I cry. Our sweet Wyatt will not get to experience a single one of those things, and that breaks my heart.

We had Wyatt’s ashes mixed with Japanese maple tree seeds to plant in the back yard. It at least gives me some peace knowing we will still be able to watch him grow. At least I have a place to sit and visit and tell him I love him daily. Who knows, maybe we will get our lucky rainbow baby someday and that child will build some great memories around that tree.

It has been 3 months now. I still cry all the time. I am still tired of people asking me “what’s wrong?” and “how are you?”.

I haven’t figured out how to talk to people yet. I have a hard enough time writing my own thoughts on paper. I am just trying to figure out how to be human again.

I know there is nothing anyone can do or say to take this pain away. I know no one knows how to comfort us. I know everyone is scared of saying the wrong thing.

I tend to distance myself to avoid awkward conversation and not have to put others in this situation.

We know several other people having babies around the same time, and I don’t know how to be there for them. I feel terrible for not being able to be happy for them. I stay away because I don’t want to be the one bringing darkness into the room when it’s the happiest time of their lives.

I am also frustrated with people thinking I should be able to “get over it” by now. I will never get over it. I feel like we lost everything and our home will never be the same.

I wish I had advice for others going through similar situations. I wish I could do something to help. I wish I had it all figured out.

All I know is that we need a safe space to be there for each other. It’s unfortunate that it’s still such a taboo subject that people are scared to say all these words out loud. I have not gone to a support group in town because I really just don’t think it will be helpful for me. But, I am incredibly thankful for this online group (termination of pregnancy for medical reasons).

It has been helpful to find others to connect with who actually understand what each other are going through. None of us know how to move on for find happiness again, but I think just opening up the subject and being able to talk about it has been a good start to the healing process.

Let’s support each other instead of tearing each other down. Let’s break the silence.

Thank you for reading my story. It may be a little disorganized, but that’s who I am right now. I would love to connect with others to figure out how to grow from this experience. Thank you for starting this group. I appreciate it more than you know. 

Stephanie

To read more stories of others that have made this heartbreaking choice, please visit the Termination of Pregnancy for Medical Reasons page.

And for our full story of Trisomy 13 with April Rey, please visit the Trisomy 13 page.

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mamasorganizedchaos

Hi there! I’m Katrina (aka Mama). I am a former engineer and chemistry teacher, turned stay at home mom and mom blogger. I have been blogging since 2015, and have taken my love of engineering and science, and tried to applied many of the same methods to my parenting adventure.

I have a huge passion for Babywise and prioritizing sleep for our children. I am mom to 3 (including one angel baby that had trisomy 13). A huge mission of mine is to share her story and legacy. I am a big believer in being real and doing what works for YOUClick here to subscribe to my weekly newsletter to follow our story. 

This blog is intended to be our story and our ideas- including successes and failures along the way. You can also find me published at Today Parenting, Her View From Home, VitamedMD, Love What Matters, and The Mirror. Follow me on Facebook and Pinterest for more parenting tips and to hear more about our journey!

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