Thursday, November 15, 2012

Just...Wrong


Today I received a letter from the geneticist who saw Avery.  (This is not the letter in its entirety, it is very long)
“She is a 6 month old Caucasian female infant who was admitted at 6 months of age urgently for failure to thrive.  X-rays were done to determine whether or not there was any cardiomegaly and rib fractures of seven and eight were seen on x-ray, as well as a healing fracture of the right clavicle.  The rib fractures are on the left.  Parathormone, vitamin D and alkaline phosphatase were all normal.  The skeletal survey was done, which I reviewed.  The cortices of the bones looked to be within normal limits.  X-rays have been reviewed previously by a pediatric radiologist in Minnesota with no comment other than the fractures.  Vertebrae were biconvex.  Ribs appear to have normal ossification.  The right clavicle showed periosseous ossification.  The question was raised as to whether or not the child may have osteogenesis imperfect.  Resident reported that the sclera were white.  No disproportional characteristics.  Ophthamology had seen the patient and found no ophthalmologic abnormalities.  The MRI of the brain was normal.  I examined Avery briefly by looked at her sclerae and looking at her generally, without a complete exam.  In regular light by the window, her sclerae appeared to be greyish-bluish in tint.  Compared to the mother’s eyes whose sclera were white, Avery’s were definitely a greyish-blue color.  The resident as well as the OT who were in the room agreed that the sclerae appeared to be greyish-bluish in tint. 
Therefore, blue sclerae, short stature and 3 fractures in different states of recalcification suggests osteogenesis imperfecta, most likely type I, since this is the mild form. 

Avery’s paternal great grandmother had “brittle bones” with fractures.  It was elected to have Avery and her parents referred in for a clinical genetics visit after having gathered all of the family history and a pedigree.  With regard to Avery, it appears as if she has OI, at least from the clinical manifestations. “

However, when I called to tell the Social worker of the letter –  I was also told that the state is pursuing custody of Madilynn and Kailee, as well (despite a full set of skeletal x-rays and a complete physical that showed excellent health for both girls and nothing unusual on their x-rays).  Our shelter care hearing is tomorrow morning and we will have to make a case for keeping Avery, Madi and Kailee in our home.

If we can’t keep custody of all three children, we will move out of our house and have my amazing sister take care of Madi and Kailee for the time being.  However, because of Avery’s unique and complex medical needs – we don’t know if my sister would be able to handle all three of our children alone.  It is a tough job, even for the most experienced mother’s.   If she we aren’t able to stay in our own home with our children, we will have to release Avery to foster care in hopes that she can get the best medical care possible in a medical foster home.  This is absolutely heart-breaking, terrifying and just…wrong. 

I am praying with all my might that the judge tomorrow will seen reason and understand that with the geneticists letter it is obvious that our family did not hurt Avery, rather that her bones are predispositioned to fractures because of Osteogenesis Imperfecta. 

10 comments:

  1. Will pray to our God almighty to send a miracle your way. God bless you and your family.

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  2. I will be praying for your sweet family. God has a special plan for you baby girl.Its hard to keep faith during rough times like this.Im so sorry that your family has to go through this. God bless

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  3. Praying for you, Matt, and your girls. I can not imagine what your going through. I will also be praying for the judge. I know it is overwhelming and sucks ( which is an understatement)but with time it will get better. Keep praying.

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  4. Shannon Salter WhiteNovember 15, 2012 at 8:00 PM

    My thoughts and prayers are with your family at this time. My 3 children plus my grandson and I all have OI type 1. May God be with you both tomorrow at your hearing. I have read your blogs twice now and both times I have cried for you and your family.

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  5. You MUST fight for your baby. Do not give up. It may be a long, hard road, but what she needs is her mom and dad. It sounds as if she has OI. Life can become somewhat "normal" even with this. I promise. Keep fighting! Do not give up!

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  6. I will be praying for your family, but especially for the judge hearing your case tomorrow. That he or she might see through the lies and accusations and realize you are innocent of this terrible thing. I hope your daughter receives a diagnosis and gets treatment quickly.

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  7. This doesn't even make sense!! The geneticist is saying it is OI, and your older girls had nothing wrong, so WHY would they even want to take them from you?! You would think before all of this court business, they would set out to 100% confirm Avery has OI. Ridiculous.
    I am just so angry and overwhelmed for you.
    I understand the system is trying to help, but this is just enraging. All my thoughts will be with your family today.

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  8. Praying for a positive outcome, so you can keep your family together. Stay strong, and fight for your children. You will be in my thoughts.

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  9. I am hoping and praying that it is just a formality hearing and that as soon as the case is presented you will have your children where they belong.

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  10. Sorry to hear you're having to deal with this when your focus (and theirs) should be on the health of Avery...Prayers for you and your family.

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