Our Birth Story

On January 5, 2012 I went to my 38 week check up with my mid-wife.  Up until that day I had a completely normal pregnancy.

During my visit my mid-wife measured my fundal height, just as she did every visit, and was concerned that I was all of a sudden measuring way too small for 38 weeks.  She sent me over to Perinatology to have a quick ultra-sound just to make sure Jameson was okay and my amniotic fluid levels were normal.  The ultra-sound came back showing that my amniotic fluid level was fine, but Jameson was measuring somewhere around 35-36 weeks.

Honest to God, the doctor described “He’s measuring small, not quite dwarf-like, but very small, and there may be an issue with the transfer of nutrients from the placenta to the baby”.  At this point in my head I was telling myself that ultra-sounds, especially third trimester ultra-sounds can be very off.  She told me that Jameson was measuring about 6lb 4 oz at this point.  Well, my older son was born 6lb 15oz, so that didn’t seem too concerning to me either.  But, just to be on the safe side she sent me over to Labor & Delivery to have a Non-Stress Test.

Jameson and I were hooked up to monitors and watched for about an hour or so before the doctor came in and told me that Jameson’s heart rate keep dropping dangerously low after my contractions and explained to me that it’s normal for their heart rate to drop during a contraction but should recover after and the opposite was happening with Jameson.  He then told me that I was being admitted and was going to have a baby!  I was excited and nervous, the news that you’re going to meet your baby is always exciting, but things were progressing with such caution and none of us still had no idea why.

At this point I had been in the hospital pretty much all day because I originally just went in for an appointment.  Now, my phone had died and I had no way to tell my husband what was going on.  The nurse called him, but due to HIPAA could only tell him over the phone that I was being admitted, only causing more chaos to the scenario.

He made it to the hospital in plenty of time though – labor took 33 hours!

I was prepped for a C-Section, but they doctor’s wanted to attempt to slowly induce with pitocin while closely watching Jameson’s heart rate.  Labor was induced at 11:00pm on January 5th.  Jameson did beautiful and his heart rate never once dropped.  But my body wasn’t responding.  I can’t remember what time, but at some point on January 6th they stopped my Pitocin drip and let my body take a break.  A few hours later they started the drip again and a total of a whopping 33 hours later from the start of all this Jameson was born at 8:18am, January 7, 2012 weighing 6lb 2 oz.

The first few moments after Jameson was born were surreal.  It was hushed in the room when he was born, and more people starting rushing in.

I had been in the hospital for 2 days already and people were now asking my husband and I if we were expecting a normal birth. – of course we were!  What kind of question was this and I still couldn’t understand why people keep asking?!  I was confused but I new in my gut something was wrong.  The look on everyone’s face, including my husbands was telltale.  I watched as a nurse brought another doctor into the room and they whispered in the corner.

All of a sudden it felt like there were a million people in the room and I was just sitting there waiting for my newborn child.

I could hear Jameson crying, so I knew he was breathing.  I kept looking at my husband and his face wasn’t revealing anything to me, I think he was in complete shock.  And then the nurse came over and told me that my baby was fine, but she had to warn me that he had some “physical deformities”.  I heard what she said but I wasn’t really listening.  At this point my body was totally numb.  I didn’t feel like I was really even there anymore.

I just nodded – okay, just give me my baby! was all I could think.

As I held my sweet, sweet baby I looked at him.  Jameson’s head was misporportioned, so much so that his eyes were bulging out of his head.  His thumbs on both of his hands were bent inward toward his body, and his big toes were like this too as well as with some webbing.  I just couldn’t understand – did I do this to him, did I break his thumbs during childbirth?  His Apgar was a 9;  the doctors and nurses immediately said that he didn’t have Down Syndrome – so what was wrong, what happened, what was this?

Over the next few days I learned a lot about Jameson and about syndromic craniosyntosis.  Because Jameson’s condition is so rare the doctor’s and nurses didn’t really know what to do (or say) with us.

Jameson was acting like a normal baby, but he obviously has abnormalities, so they were hesitant to let us go home.  They didn’t know the extant of what his medical complications might be, but so far he was otherwise acting like a “normal”, healthy baby would.  Before we left

Jameson had ultra-sounds on his brain, heart, kidney’s and bladder, an EKG, and a 4-point stress test within a few days after he was born.  They finally let us go home 3 days after he was born.  The emotions I felt were all over the place.  A part of me was mourning the baby I thought I was going to have while a part of me was welcoming the baby I did have into my heart and our family.  It’s hard to put into words what it was like.  There was no doubt I had immense love for this child, but it was very confusing at the same time.  Instead of spending the first days of his life celebrating, I spent it worrying.  I knew we had a long road ahead of us, but I had no idea what that road was going to look like.

My husband and I had spent almost every waking hour researching Jameson’s symptoms trying to figure what it was that he has.  We were kind of out-doctoring his doctors, lol.  We couldn’t get anyone to say anything or answer questions.  I think they were all too unsure and didn’t want to say something that was untrue or lead us down the wrong path.

We were certain that his coronal cranial sutures were fused, and that the issues with his hands and feet were related.  But, the information was limited, and Jameson didn’t fit the complete picture of what we found.  We were fairly certain it was syndromic craniosynostosis.  Syndromes such as Apert’s, Crouzon’s, Saethre-Chotzen, and Pfeiffer syndrome were the ones he most closely fell under.  After enough digging we were pretty sure it was Pfeiffer syndrome.  Again, the information was very limited.  The wonder and worry set in and I spent countless hours wondering what my new baby’s life was going to hold for him.

The first few weeks were spent scheduling and researching doctors so we could make sure Jameson got all the care he needed.

Needless to say, the beginning of our journey was a shock and life changing adjustment.   We weren’t expecting anything like this and it took quite some time for the reality to set in.  Underlying throughout all of this though, was that before Jameson was born we loved him, and that love never waivered.  He was our baby.  Was it scary?  You bet.  But everyday that passed Jameson showed us his strength and we got to know this sweet boy that we were meant to take care of.  Just like with the new addition of any baby it was soon hard to imagine our life and our family without him.

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33 thoughts on “Our Birth Story

  1. Jameson is such an adorable little guy, and some of his stories you tell remind me of my son . Jameson I wish we lived closer to you so my son could go to the same school as you, to show you you’re awesome and that you can teach him about things you know. But, I want you to know that I admire your mom Jameson for speaking her mind, and also for having such a good kid she is lucky to share with the world. Jameson tell your mom to share more stories of you, what you like to do, places you go, etc. Because that is who you are, that’s who we are, the things we do say and what we learn, what we love. I hope to read more , you’re amazing. Not for any differences, but for your stories 😊

  2. Jameson is such an adorable little guy, and some of his stories you tell remind me of my son . Jameson I wish we lived closer to you so my son could go to the same school as you, to show you you’re awesome and that you can teach him about things you know. But, I want you to know that I admire your mom Jameson for speaking her mind, and also for having such a good kid she is lucky to share with the world. Jameson tell your mom to share more stories of you, what you like to do, places you go, etc. Because that is who you are, that’s who we are, the things we do say and what we learn, what we love. I hope to read more , you’re amazing. Not for any differences, but for your stories 😊

    1. Little Jameson,

      Looks the cutest!
      A story like yours Amber is inspiring and shares a lot of light.
      Sending my love and the best is yet to come for you and your family.

      xxxx

  3. Dear Jameson,
    I just want to tell you I know you are as cute as a button. My Mom worked with kids that are special for 33 years, she would have taken one glance at you and decided you and your family were our family. Mama always said that the kids God made special on the outside, had an extra dose of awesome just for good measure. I was raised to believe that everyone is special, but some just get to be loved on just a little more to get through the day.
    Jameson, you are one of God’s perfect cuties, he is just sharing you with the world, to show the rest of us how to be awesome like you! Next time someone stares, just tell em , don’t be jealouse cause I’m beautiful!

  4. You are strong, God will never give you more than you can bear. God do everything for a reason, everything in life happens for a reason. Jameson is beautiful and he will be ok. I was born with some problems and I am ok today. I was born a preemie and I had a abnormal shaped head and big bulging eyes. I was teased as a child and still as an adult, but things have gotten better for me. I’m strong because I know God got me and he also got your son too. Your son will be fine. Your family is strong, you, your husband and son have to be strong for Jameson and with love and care he will be fine. I pray and with you and your family nothing but the best in life.

  5. I say he’s adorable!

    I hope that when he’s old enough he’ll be a Cub Scout. That would be great for him — he can show the other Cubs how smart he is and what fun he is — he’ll learn teamwork, make friends and do a whole lot of other neat things.:)

    Wishing you the best, buddy. Stay strong.:)

      1. That would be cute! I do not know how they would say that, I think he is adorable! I don’t understand how people think its ok and how they can even live with themselves if they did such a cruel thing. They should treat your son and others how he is just like any other boy and is not different in any other way. I say he’s brave. My school is actually doing a school project called “Spread the word to end the word.” If you look it up it is about how people need to stop saying the r word. It’s mean. I am Berhana Robbins and I am 12 yrs old and in 6th grade. I am doing a speech for how the r word can affect people ( and bullying disabled children in general) in so much ways and I am just explaining how would such cruel people bully such innocent kids. God Bless you and your family!

        love,
        Berhana Rahel Robbins

  6. Thank you for sharing you and Jameson’s story. What a gift from God he and your other sons are. I will take to heart the life lessons you passed on on how to react when a child is different. Whenever my children and I would see someone that looked different and they made a comment it was usually “why are they that way?” I would tell them that God made them different just like there are different in some way (eye or hair color, nose size etc. ) from me. That was usually enough. Thank you for letting me know it is o.k. to come up and say Hi and talk to you and your child. In other words it is fine to treat your family like any other family with politeness and friendliness. May God bless your whole family.

  7. Jameson and family, while it may be hard to remember sometimes, you’ve been blessed with a constant reminder to lean on God for strength!

  8. Thank you for your suggestion to go up the child and parent and just introduce yourself in that type of situation. I have a grandchild recently diagnosed with a rare genetic defect. He may have more pronounced physical signs as time goes on. Right now it is mainly language and behavior, but that too draws attention. I will encourage parents and their children to come say hi to him. He will love it. Prayers for your family as you constantly meet new challenges! Know that you have support from many more people than you will ever actually meet.

  9. I LOVE this webpage. i have cruzon syndrome and was constantly made fun of growing up. I think i still get teased every now and again as an adult. It’s actually sad that I get adults that make fun of me now along with children. I try to educate as many people as I can since i feel like if they understood how i felt in my shoes, they wouldn’t be saying the things that they are. you are so very strong! i loved the article! thank you so much for posting this. I’m almost 30 and am still learning more and more about cruzon syndrome.

  10. Thank you for sharing your experience and for educating us about Jameson’s disease. I can’t even imagine how painful it must be to hear these mean comments from passerbys. Jameson’s journey has been very heartwarming to read. If we met him, we’d give him a big fat hug! He looks like a very sweet little boy. Best wishes to him and your entire family.

  11. I saw his picture and was immediately drawn to read the article on Huffington Post because of the happiness I see in his beautiful face. I can see the love, happiness and mischievousness of every little boy I have ever known. I wish I could bump into you in a public place just to say hi to you and Jameson.

  12. Great blog. We have a Crouzon boy. He’ll be 12 next week. It does get easier, but the stares still bother us. Here’s hoping the word gets out and more people approach these wonderful children, who just happen to look a little different.

  13. I, too was born with Crouzon’s Syndrome. Like Jameson, the cranial plates fuse in the womb. A person can look not unlike Jameson, actually. We don’t have the webbing or changes in fingers. We can have hearing, sight, and cognitive issues. I was lucky in that I’m only different looking. It is an autosomal dominant trait, meaning it can just happen. Tests to determine if the baby is affected aren’t consistent. I didn’t want my unborn child to go through what I went through. As an adult issues do arise, but I’ve found that a friendly smile and open approach goes a long way in allaying another’s fears. My only advice to you is that when Jameson tells you about an incident where someone was mean, don’t tell him they didn’t mean it. They did. They may not know better, or are reacting out of fear, but don’t minimize Jameson’s distress. Acknowledge his feeling badly, let him have a good howl, and then move on. There are so many people out there who will appreciate him for what he has to offer, the others will pale in comparison. I wish you and Jameson well.

    1. Sherry, I appreciate your insightful comments and I have a daughter with symptoms of Cruzons. I wonder if we could connect?

  14. I really enjoy reading your blog and seeing the wonderful pictures of your son. You’re such a great mom and your love shows through all the beautiful photos of Jameson and his cute little smile. I pray that all of his appointments go well! Thank you for sharing your son with the world!

  15. Even growing up I remember not knowing what to say when I would encounter someone who looked different. I was painfully shy with most everybody. It’s great that you are sharing with people, hopefully more of us shy types who don’t want to hurt anyone’s feelings will open up to the idea of initiating a chat. Even now, I can muster a “hi” to someone special but other than that I don’t want to say something that would draw more attention to the person’s syndrome or whatever the case may be to avoid making them uncomfortable. I know that a lot of people look away like they don’t notice, it’s not that they don’t care but I can see from your perspective even that could cause hurt feelings. I think I do a good job with my nieces and nephews teaching them about kindness and including kids especially those who may feel left out, but reading your experiences is helpful – thank you! 🙂

  16. He is beautiful, inside and out. My 14 year old daughter and I just finished reading the book ” Wonder” heard of it? It deals with pretty much the same situation you are in and it is beautifully written. I hope many many people read this article and see the soul in your sons eyes!

  17. I read about Jameson via an excerpt that was on the Huffington Post. I was brought to tears reading of your birth story and Jameson. He sounds like an amazing little man and you a very proud and strong momma. I only hope that my Alex and I gets a chance to meet your Jameson or someone like your Jameson to say hi and maybe even become friends. Keep up the strength and please send hugs to your little man from us.

  18. Jameson is beautiful! The moment I saw his picture I knew he was a cranio kid! I was born with craniosynostosis too! But unfortunately unlike Jameson, I have never been diagnosed with a specific syndrome. I am now 27 years old and it does get better! I have 2 university degrees and am a successful teacher! Life does and will go on! I still struggle with my health periodically but I wouldn’t change a thing. I had surgery at 8 months old to correct the skull and multiple jaw/mouth surgeries to correct my bite. In addition I recently required a septo/rhinoplasty to help with my sinuses. It was all painful but very worth it. I love telling people about being a cranio kid and what it means to me! I also look forward to raising my children to be accepting and loving to everyone! Please keep us all updated on Jameson as he grows! Love from Canada!

  19. Hi 🙂 I stumbled across this story on a news site and what hit me was the words “he’s just a little boy” that really got to me and when I clicked further I saw the face of a adorable little boy in total paradise with food all over his moosh. Adorable. I myself have a 4 yr old daughter and my wife is expecting, we r having a boy. I felt very emotional reading this story as most parents know, we love our kids beyond words no matter what they look like. It’s instant love when they are born. I don not see a little boy with a disability in that photo, I see just a gorgeous boy with a wonderful mother. Xoxo

  20. Thank you for sharing your story. As a mother of an autistic child, I too know what it’s like for your child to be different. To see the stares, to hear the comments, to feel the heartbreak. Just remind yourself that there are good people in the world, with open and loving hearts and they know that Jameson is beautiful. When you give him a kiss and a hug goodnight tonight, will you please give him an extra squeeze from me? ;0)

  21. Hi,

    I loved seeing the beautiful picture of Jameson. It sparked many beautiful memories of my Sean as a baby. My son Sean was diagnosed with Pfeiffer Syndrome at birth 22 years ago and had his first cranial surgery at 7 weeks old at Boston Children’s Hospital.
    He was also diagnosed with a Chiari Malformation at age 1.5 and had surgery to correct that. He has had corrective surgeries on his eyes, upper and lower jaw, and nasal reconstruction with beautiful results.
    I would love to talk with you and send a picture of Sean.
    Eileen
    eileenkt16@aol.com

  22. Your son Jameson is precious! I wish I could give him oh so many hugs and tell him how wonderful he is! I can understand how a child may be confused by his looks at first, but as an adult I can’t help but be smitten!

  23. I only see a cool little kid I don’t see a disorder and I’m sure he doesn’t, maybe its some people’s humanity that has the disorder. He is precious and your story has gone as far as New Zealand.
    Would you consider a facebook page? I’d love to send him something from New Zealand 🙂

  24. So glad to meet you Jameson you are one handsome little guy! My thoughts and prayers are with you and your family, because I to know how you feel, I have 5 adopted children 3 of which have what’s called the 4Q deletion syndrome which is rare. My son has had to have surgery on his head to remove part of the bone because it closed to soon as an infant to keep it from causing brain damage. It also causes faucial differences that people stair at and make fun of. So may God bless you and keep you on your journey !

    1. hi im from ethiopia i read jemson storry my first babe was cleft palet and he don surgery when he was 1now he is aperfect 5year aftepr3misscarage i get my second babe with coronal sutur the left forhead and eay socket appreing flat in her ethiopya they do only opeining sutur and he need cranio facial doctor in our country there is no craniofacial doctor as amom its hard please help me please

  25. What a beautiful little boy you have! You are an amazing mother and I applaud your strength. Thank you for sharing your journey and reminding other mothers the importance of including children such as Jameson in their children’s lives. He is a remarkable young man!

  26. Ciao, io sono una mamma italiana di tre bambini, quando ho visto la tua foto, ho pensato che tu sei di una simpatia unica, e sei un bambino come tutti….Anche da noi in italia capita che qualche bimbo prende in giro per i difetti di un compagno, perche’ porta gli occhiali, oppure ha un difetto fisico, ma questa e’ la maleducazione, la ignoranza!! Tu, cresci sereno, non ti deve importare di cio’ che dice la gente, perche’ sulla tua strada incontrerai anche cuori grandi e pieni di amore….A me piaci da morire e vorrei essere la tua mamma….TU SEI SPECIALE e bellissimo ….un bacio ….Una mamma italiana-

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