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Thursday, January 7, 2010

Wyatt was Misdiagnosed!

I am so mad tonight I swear my head could spin completely around! I was going to do a sweet post on how I was 15 weeks pregnant and blah, blah, blah... In my attempt to write this post I googled images of 15 week old fetuses. I found a few images to use, but as I was skimming through the images, I came across a baby that looked like a less developed Wyatt!

I've been questioning Wyatt's diagnosis of Thanatophoric dysplasia since he was born. He just didn't look like a TD baby to me. It was clear he had some sort of a dysplasia, but the exact condition eluded me. I consigned myself to accept the diagnosis doctors had given me and move on... until tonight.

Wyatt had a condition called Achondrogenesis. I am 100% convinced after skimming through all the information compared to Wyatt's over the last couple of hours. The images of these baby's compared to what Wyatt looked like was uncanny... Not to mention the medical history. I don't want to make anyone uncomfortable by posting those images on here, but for those of you who would like to compare images of babies with this condition to Wyatt's appearance... you can find them by simply googling images of "Achondrogenesis baby".

So why am I so upset?

The result was still the same... Wyatt died no matter what his real diagnosis was, right?

Well yes. However, having this diagnosis over TD really changes things for our family.

For instance, TD is a spontaneous genetic mutation that can hit anyone without prejudice. But not Achondrogenesis! No, Achondrogenesis is inherited. We went from having a 1 in over hundreds of thousands chance of having a baby with this condition, to having a 1 in 4. And not only that, this wonderful little gene has been passed down to my living children and could very well cause them to have a baby with the same condition as Wyatt.

Can I just say I feel terrible. I know I really have no control over what genes I pass down to my baby... but this means I did that to Wyatt. It was something that was wrong with me that I, in turn, gave to my baby. I'm really feeling like a failure right now. I feel like I let Wyatt down. I feel like I let my living children down because I'm giving this burden to them when they decide to start a family. I feel so guilty!

At the same time I'm furious. Why didn't doctors take the time to diagnosis Wyatt correctly? I even asked if his diagnosis was correct because he didn't look like a normal TD baby. But no, doctors are never wrong, are they?!?!

I've gone from knowing everything I possibly could about the condition that took my sons life, to knowing absolutely nothing in the click of my mouse on a familiar looking picture. A years worth of pouring through information on TD... getting excited when they found where the mutation of this gene occurred... it all seems so wasted.

Again, I know either way, my son is still gone. It just makes my life seem that much more uncertain and unstable. I feel like my worlds been shaken up when I really just need it to settle down and start taking root again. Will you please say a little prayer for me? I really need God to give me some peace and security tonight.

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22 comments:

Just Breathe said...

Danielle, I am so sorry. When does your pain stop. How could the doctors be so wrong. I am with you in this roller coaster you are in.
I was excited about your news about the new baby and then here you are with another reason to feel pain. I will pray for your comfort and strength. ((HUGS))

croleyc69 said...

I'm praying for you and I do think of you so often. Just know that through every storm we are given God will never leave you. I'm sorry that Wyatt was misdiagnosed. Doctors today make so many mistakes I really dislike going to one. Praying for peace and take care of yourself.
{{HUGS}}
Caroline

Trisha Larson said...

praying...

Franchesca Cox said...

Danielle, you did not do this to any of your children. I know we want to take the blame but we can't. I hope you find peace in this new knowledge. I hate the uncertainty that these things bring and I am sorry that the doctors misdiagnosed Wyatt. I wish I had something to say that would actually help you feel better. Just know I am praying for you and for your little boy on the way always.

XOXO

Malory said...

I cannot imagine the turmoil you are in. I am so sorry this has happend. I will say a prayer for you.

Tina said...

Oh Danielle, I am so sorry. I do feel that at times we do just take for granted that drs are always right, but they are human too. I do know though, that you did not "do" this to Wyatt or your other children. This is not something you caused so you need to let go of that (I know easier said than done.) I will be praying for peace to find its way to you soon. xx

Joann said...

Danielle - I am praying for you, for your heart to be calmed and for any thought of guilt to washed away. You are right that you don't have control over what genes are passed down or not, but we do have control over our outlook on our lives. I can't begin to imagine the emotions that you went thru last June, nor what you are going thru now...but I do know that GOD is bigger than any of us and his plans (although frustratingly not always revealed to us) always prevail to bring him glory...and us peace in his loving arms. I will continue to pray for you to feel GODS loving embrace and his gift of peace in your life.
~ Joann

Anonymous said...

Danielle, I am so sorry that you are upset tonight. I would be, too, since this means something different for your children than you were told. I pray that the Lord will put His loving arms around you and give you some peace so you can rest tonight.I am sending hugs and love from Texas.
Blessings, Sarita

Cori Lynn said...

Praying for you. I can not imagine your pain. All I do is offer hope and let you know that people LOVE you..complete strangers like me :)

God is with you always!

Elizabeth said...

It makes it soooo much harder to deal with the loss of a child when you do not know why you lost them. I understand your anger and frustration and fears. It's NOT your fault you lost Wyatt. You didn't know you had a bad gene. I have a bad gene I didn't know about and both my boys had to have surgery at 6 weeks old to fix their pyloris. Not as bad as what you are dealing with but still...I didn't know and you didn't know. But now that you feel there was a misdiagnosis then you need to let your OB/GYN know your concerns so that they can watch you closely in this pregnancy. It's very upsetting and worrisome and you have every right to feel the way you do. Even though it wouldn't have changed the outcome it's still important to know that it had a high chance of happening again. Keep your head up high though. May God guide you to the truth and bring you peace as you have a healthy new child to bring into the world. *hugs*

nae~nae said...

Hon, you didn't do that to your son. You can't blame yourself for something that is completely out of your hands. And it does make you think about how many more children you want to have when you think you would be putting them through the same circumstances. But you just enjoy your children, and when the time comes, explain to them what can happen and pull out your book of wyatt, and be there if they should go through it.

Kristy said...

Oh Danielle, i'm so sorry. I'm not sure what to say. Its not fair to you, to your family or your children. Most importantly, not fair to Wyatt. I wish this wasn't the case, I wish it was just a genetic fluke. The only thing you can do is move forward with the information you have, sadly thinking "what if" won't change the outcome - trust me, i've done it over and over. Can your children be tested for this mutation? Maybe now focuse on arming yourself with all the information you can find about this new disease. Maybe that will give you some peace about the future. Lots of *hugs*

Missing Kasey said...

Say a prayer ((hugs))

Nicolle

Anonymous said...

Keep posting stuff like this i really like it

James Patrick said...

I am so sorry that Wyatt was misdiagnosed and that you had to find out for yourself instead of Doctor taking the time to really look at Wyatt diagnosis. That has got to be so difficult to deal with. Although I can not relate with a misdiagnosis I can speak to your feelings of guilt. I know when we met I talk to a little about my situation with Grace and our other angel babies. It was my body and blod type that cause all 4 of thier deaths and it wasnt until James' pregnancy that we discovered this. All the doctors missed it and refused to listen to me that it was more than just chance. I tell you this to say that the feeling of guilt will eat you alive. I had to get counseling to deal with it and through loves of prayer I have been able to release myself from those feelings. Satan tries to sneak them in every once in awhile but I have learned that God created my body and the bodies of my children. None of this surprised him and has hard as it is for me to understand thier is a plan for my grief. I hope this comes across the way I am intending, as another mother that knows what these feeling can to to your heart and your relationships with the world. I am praying for peace and comfort to come into your heart. You are a wonderful and loving mother to all 3 of your children and will be to this new life growing inside you as well!

MommyIvy said...

I am so sorry. Don't blame yourself Momma. Its not your fault and you didnt do it to him.

Mary said...

Danielle, I'm sorry. I can't imagine what you are going thru right now but, I am praying whole heartedly that the baby you are now carrying arrives healthy into your arms. I know this is one more worry that you shouldn't have. You are in my prayers.

Holly said...

Oh wow, Danielle. What a shock that must of been to see that picture and connect the dots. I hope you say something to your dr about this. Could they do a blood test on you and Joseph to check and see if you are carriers? Like others have said, it isn't your fault although those words prolly don't make you feel any better about it all. I'm sorry that they didn't get it right.

MRS. HAIRSTON said...

Everyone has said things that are oh so true. :) Just think about your three beautiful babies that you have made. And the one that you are making :) I know you know that God will not give you more than you can handle. We all have things that happen in our life that we don't understand, but God does and he has a plan :) Andrew and I are praying for peace and understanding for you and your husband :) You CAN get through this! As my mom says, "this too shall pass."

Karen said...

Praying for you, Danielle. For peace and resignation and for your new baby in your womb. I'm sorry it looks as though they misdiagnosed Wyatt. I have to echo the other women who've said it: You didn't do this to your child. It just happened. And what a testimony to the value of all human life your love for Wyatt has been - and think of all the people Wyatt's story has touched. (((Hugs)))

The Blue Sparrow said...

Im so sorry Danielle! But I must say, you are not a failure and it is not your fault! Those are Satan's lies. I will be praying! *HUGS*

shashank said...

Here is a link to more information about the genetics of Achondrogenesis that was prepared by our genetic counselor and which has links to some useful resources for those dealing with this condition: http://www.accessdna.com/condition/Achondrogenesis/14. There is also a phone number listed if you need to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA